Austin’s Feeding Tube Journey
“Tube feeding doesn’t hold Austin back; it helps him thrive.” 💜
A Life Supported from BirthAustin is 6 years old, and his feeding tube journey began the moment he entered the world.
He was born at 41 weeks and 5 days via emergency caesarean following a sudden placental abruption. His arrival was traumatic and unexpected, and from birth it was clear that Austin would need medical support to help him thrive. One of those supports was a feeding tube, something that has been part of his life ever since.
Medical Journey and ProceduresOver the years, Austin has relied on several types of feeding tubes, including NG, NJ, PEG-J and now a PEG. Each change reflected his medical needs at the time and the ongoing efforts to support his growth, nutrition, and comfort.
In August 2020, Austin underwent a fundoplication due to severe reflux. Feeding was not just difficult; it was uncomfortable and unsafe without medical intervention. Tube feeding ensured Austin could receive the nutrition his body needed while protecting his airway and digestive system.
Overcoming Early FearsAt the beginning, tube feeding was incredibly scary. Like many families, we were overwhelmed by the equipment, the medical language, and the fear of doing something wrong. We grieved the feeding journey we thought we would have and struggled with the emotional weight that often comes with tube feeding.
But over time, education, support, and experience replaced fear with confidence. Looking back now, choosing tube feeding was one of the best decisions we ever made for Austin.
Thriving with Blended FoodOne of the most life-changing moments in Austin’s journey was transitioning from formula feeds to a blended food diet.
This change had a profound impact on his health and quality of life. His reflux improved, his constipation eased, and his weight gain became more consistent and healthier. Beyond the medical improvements, blended feeding allowed Austin to experience a more natural and nourishing way of meeting his nutritional needs.
The difference in his comfort, energy, and overall well-being was remarkable.
Life Beyond the TubeAustin’s feeding tube is not a setback; it is a support. It allows his body to grow, heal, and function in ways it otherwise couldn’t. It enables him to focus on being a child: learning, playing, laughing, and living life to the fullest.
We share Austin’s story to help raise awareness, reduce stigma, and remind others that feeding tubes are not a last resort or a sign of failure. They are a medical tool that can be life-saving and life-changing.
💜 For Feeding Tube Awareness Week, we proudly celebrate Austin and all tubies. Feeding tubes help children like Austin not just survive, but truly thrive. 💜
He was born at 41 weeks and 5 days via emergency caesarean following a sudden placental abruption. His arrival was traumatic and unexpected, and from birth it was clear that Austin would need medical support to help him thrive. One of those supports was a feeding tube, something that has been part of his life ever since.
Medical Journey and ProceduresOver the years, Austin has relied on several types of feeding tubes, including NG, NJ, PEG-J and now a PEG. Each change reflected his medical needs at the time and the ongoing efforts to support his growth, nutrition, and comfort.
In August 2020, Austin underwent a fundoplication due to severe reflux. Feeding was not just difficult; it was uncomfortable and unsafe without medical intervention. Tube feeding ensured Austin could receive the nutrition his body needed while protecting his airway and digestive system.
Overcoming Early FearsAt the beginning, tube feeding was incredibly scary. Like many families, we were overwhelmed by the equipment, the medical language, and the fear of doing something wrong. We grieved the feeding journey we thought we would have and struggled with the emotional weight that often comes with tube feeding.
But over time, education, support, and experience replaced fear with confidence. Looking back now, choosing tube feeding was one of the best decisions we ever made for Austin.
Thriving with Blended FoodOne of the most life-changing moments in Austin’s journey was transitioning from formula feeds to a blended food diet.
This change had a profound impact on his health and quality of life. His reflux improved, his constipation eased, and his weight gain became more consistent and healthier. Beyond the medical improvements, blended feeding allowed Austin to experience a more natural and nourishing way of meeting his nutritional needs.
The difference in his comfort, energy, and overall well-being was remarkable.
Life Beyond the TubeAustin’s feeding tube is not a setback; it is a support. It allows his body to grow, heal, and function in ways it otherwise couldn’t. It enables him to focus on being a child: learning, playing, laughing, and living life to the fullest.
We share Austin’s story to help raise awareness, reduce stigma, and remind others that feeding tubes are not a last resort or a sign of failure. They are a medical tool that can be life-saving and life-changing.
💜 For Feeding Tube Awareness Week, we proudly celebrate Austin and all tubies. Feeding tubes help children like Austin not just survive, but truly thrive. 💜
Story contributed by Katelyn; February 2026
Brielle's Story
I am 20 years old, I’m from Adelaide, South Australia, and I have been tube-fed since September 2025.
I have multiple conditions affecting my stomach that have caused the need for tube feeding, including Median Arcuate Ligament Syndrome (MALS), Superior Mesenteric Artery Syndrome (SMAS), and Gastroparesis. For me, eating causes severe pain and nausea, and I am not able to eat enough to keep me healthy. This led to a decline in my mental health as I was constantly exhausted, in pain, and wasn’t able to study, play sports, and hang out with my friends due to malnutrition.
When my doctors told me that they thought tube feeding was necessary, I felt upset and scared. I had no idea what to expect around how it would be placed, how to care for it, and how people would treat me with such a visible medical device, especially being a young female and the surrounding stigma. Since having a feeding tube, I am no longer dealing with constant pain. I have more energy and have been able to return to doing the things I enjoy and am feeling the best I have felt in a long time. That’s not to say it has been easy, and it was a huge adjustment, but I have met some amazing people who have helped me through it.
A message I want people to understand is that feeding tubes save lives. They can be temporary or permanent. Not everybody with a feeding tube can’t eat anything at all, and tube-fed people can do all the same things as people who eat by mouth.
Story contributed by Brielle; January 2026
Jessie's Story
I am 38 years old living with several complex and debilitating conditions.Ehlers Danlos Syndrome (EDS), Severe Gastroparesis, Fibromyalgia, and intestinal dysmotility, plus an array of other comorbidities —all of which have dramatically impacted my health, independence, and quality of life.
Due to severe gastrointestinal paralysis, my stomach no longer works properly. I am now jejunostomy tube fed, meaning all of my nutrition has to be delivered directly into my small intestine. This is not optional—it is the only way I can safely receive the nutrients I need to stay alive.
At the time, a feeding tube felt like the beginning of the end. But now I know better. It was in fact, the beginning of LIVING.
However, jejunostomy feeding comes with ongoing costs for formula, tubing, medical equipment, pump supplies, dressings, and frequent medical appointments. These expenses add up quickly and are not fully subsidized.
My digestive system is also affected by intestinal dysmotility, where the muscles of my intestines struggle to move food along. This can lead to intestinal failure, severe pain, malabsorption, dehydration, dangerous weight loss, and repeated hospital admissions. Daily life becomes a constant battle just to maintain basic bodily functions most people never have to think about.
Much of this stems from Ehlers–Danlos Syndrome, a genetic connective tissue disorder. Because connective tissue holds the body together, EDS can affect every organ system. In my case, it contributes to my gastrointestinal system slowing down and shutting down, joint instability, chronic pain, fatigue, and problems with autonomic function. Over time, EDS can cause multiple organs to become weak or dysfunctional, leading to a cascade of medical challenges that require continuous management.
Despite the severity of my conditions, I currently have no NDIS funding or financial support, leaving me to carry the full burden of these medical costs alone. The reality is that these illnesses are lifelong, progressive, and extremely expensive to manage. I am doing everything I can to stay stable, but I cannot do it without help.
Unfortunately not everyone gets saved and not everyone survives.
When two tubies became one...
I met my partner Tim in hospital, first in the recovery ward and then again in the Gastroenterology ward. Tim is 47 and found out about having Gastroparesis secondary to Type 1 diabetes in 2023.
He currently has a GJ tube, and I have a Jejunostomy tube. He is undergoing his 15th surgery in 12 months soon to get a separate G and J tube and I will be getting the same.
Your feeding tube doesn't define who you are, it doesn't make you any less beautiful. You are still the same person you were before the feeding tube.
Story contributed by Jessie; January 2026
Jessie has a GoFundMe page with all donations going directly towards essential medical supplies, feeding formula, treatment costs, mobility and daily living needs, and ongoing care that keeps her safe and nourished.
Lloyd's Story
This is Lloyd, and this is a snapshot of his feeding tube journey, one that looks different to others, because every child and every body is different.
From early on, it became clear that feeding wasn’t going to be simple for Lloyd. What many families experience as an exciting milestone moving through milk, purées, textures, and shared mealtimes became a source of stress, worry, and exhaustion. In this time, Lloyd was diagnosed at 2.5 years old with a Rare genetic condition - IQsec2 Associated Neurodevelopment Disorder which led to an array of conditions including intellectual disability, Cortical vision impairment, Epilepsy, Hypotonia and many more.
Feeding always took a long time, energy, and constant monitoring, and for a few years, this approach worked and allowed Lloyd to grow and continue gaining strength.., until it didn’t. Despite everyone’s best efforts, Lloyd began losing weight at 5 years old and he was not getting what his body needed to grow and thrive. Not only was he losing weight, but his seizures also increased significantly with Lloyd experiencing up to 250 seizures a day - extremely reducing his quality of life.
Like many families on this path, we spent countless hours in appointments, trying strategies, adjusting plans, and hoping the next change would be “the one.” There were moments of doubt, moments of grief, and moments where it felt like we were constantly explaining and re-explaining why feeding wasn’t working and why we were worried. Advocating for your child when the issue isn’t always visible can be incredibly hard.
Eventually, we were left with one option and that was to attend the Emergency department at our Children’s Hospital and that’s when a feeding tube (NG) became part of Lloyd’s care. It wasn’t an easy decision, the unknown rarely is, but it was a turning point. The tube took pressure off Lloyd and off us. Feeding no longer had to be a battle. Nourishment became reliable, measurable, and safe. Instead of every feed being about survival, it became about support.
With his tube, Lloyd could focus on being a kid. He had more energy. He could attend school, enjoy activities like hydrotherapy, and take on the world in his own way. His tube didn’t hold him back — it held him up. We later transition to a PEG (G-tube) and this really changed our world- we finally got to see his beautiful little face without a tube and tape hugging his face, alongside the horrid rashes and allergies he endured due to the tape.
What we’ve learned along the way is that feeding tubes are not a failure. They are a tool. They are healthcare. They are love in a practical form. For some children, they are temporary; for others, they are long-term. Either way, they give children what they deserve: the chance to grow, to feel well, and to participate in life.
Feeding Tube Awareness Week is about visibility, understanding, and kindness. It’s about reminding families that they are not alone, that “fed is best,” and that there is no single right way to nourish a child.
Lloyd’s feeding tube is just one part of who he is but it’s a part that has made a real difference. And for our family, it has brought relief, stability, and hope.
To anyone still in the thick of it, questioning, advocating, pushing for answers, trust your instincts. Keep going. There is support, and there is a whole community walking this path with you.
Story contributed by Maya; February 2026
Maya is also the founder of Rare Wear – Adaptive clothing for children with a disability or additional needs.
Noah’s Story
Hello, this is our son Noah.He is 6 years old and will be 7 in May — full of personality, curiosity, and a smile that lights up a room.
Noah was diagnosed with Level 3 Autism just before he turned 3. A year later, he was also diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID), and he has dysphagia, which means swallowing is difficult for him. But his feeding struggles started long before we had names for any of it.
As a baby, breastfeeding was hard. He would only feed for about five minutes at a time, then go hours without feeding again. We knew something wasn’t right, but we were told some babies are just like that.
In the early months of solids, things weren’t terrible. Then, at 10 months old, it was like a switch flipped overnight. Foods he had previously eaten — Vegemite sandwiches, vegetables, even his favourite cheese — suddenly made him gag. One by one, his “safe foods” disappeared. A few returned, but most never did.
We were told,“It’s just a phase.”“He’ll eat when he’s hungry.”“The same goes for fluids.”But he didn’t.
Instead, we had sleepless nights, lying awake wondering if he’d be okay with barely anything in his tummy. Appointment after appointment, we heard the same thing — toddler stage, they grow out of it.
By 2½, we stopped waiting for him to “grow out of it” and started fighting for real help. That’s when we found Lively Eaters. Their feeding therapist and dietitian supported not just Noah, but us as a family. For the first time, we didn’t feel alone, and we felt believed.
Still, the medical system was a battle.
Because Noah was somehow still growing and his blood tests looked “okay,” our concerns were often dismissed. His therapists regularly sent letters explaining how unwell he was from poor nutrition and fluid intake, but we kept being pushed aside.
Then 2024 hit, and things became harder than ever. Noah started looking unwell — pale, exhausted, just not himself. He would be admitted to hospital so they could “observe his eating,” but we’d leave hearing, “You’re doing the best you can.”
But our best wasn’t enough to fix what his body couldn’t do.
In July 2025, his teacher sent a letter saying Noah couldn’t last even half an hour at school without passing out. He wasn’t learning. He was just trying to get through the day.
That was the turning point.After years of fighting to be heard, Noah finally got his feeding tube.
Fast forward six months…He is thriving.
Food and fluids are still hit and miss, but the tube has given his body what it was desperately missing. He has energy. He is learning. He is having fun. He is exploring foods without the same pressure. Most of all — he looks like himself again.
This journey has been long, exhausting, and emotional. If it weren’t for the feeding therapist and dietitian at Lively Eaters, we truly would not be where we are today. In our eyes, they are our superheroes.
Feeding tubes aren’t failure.They are support.They are safety.They give kids like Noah the chance to grow, learn, and just be children.And every single fight was worth it to see our boy shine again. ✨
Story contributed by Sharon; February 2026
Watch a video from Lively Eaters in our Virtual Education Program.
Sophie's Story
Sophie is my youngest child, a little three-year old girl who followed three energetic brothers. From the moment I discovered I was having a daughter, I was overjoyed. Sophie was pure perfection, and as my last child, I was determined to breastfeed her for a full 12 months.
However, during her six-week immunization, everything changed. Sophie experienced her first seizure, and as a mother, not knowing what it was shook me to my core. It wasn’t anything dramatic as portrayed in movies, but rather a frightening leg and arm kicking. At just ten weeks old, I witnessed her eyes roll back in her head, prompting me to rush her to the hospital. Thus began our journey with epilepsy.
Initially, Sophie was put on medication, having a brief respite before another seizure would occur. This cycle continued until her four-month needles, after which everything regressed. The vibrant spark of her personality faded, taking her smile and many of her abilities with it. Seizures would sometimes last for hours, leading to our first introduction to a nasogastric (NG) tube. At four months, Sophie started the ketogenic diet, but my milk supply dwindled, forcing me to wean her. That was heart-wrenching, as breastfeeding had provided comfort during her seizures.
Despite this, Sophie adapted to bottles, but her condition worsened. Days were often spent oscillating between seizures and sleep, either from her usual medications or rescue meds. On several heartbreaking occasions, we had to rescue her multiple times in a single day. From the outset, I committed to learning how to manage her NG tube; I wasn’t leaving the hospital without that knowledge. Sophie’s sensitive skin required frequent changes of her tube's placement to prevent sores and infections. As I navigated through these challenges, Sophie had a 29-hour seizure when she was six months old. Doctors advised me to prepare for the worst, but I remained steadfast, and within just 48 hours, I had her drinking again. We introduced a new medication that provided some relief, but after that hospitalization, I insisted on getting a feeding pump. Gravity feeding six times a day with three other children to care for wasn’t sustainable. At eleven months, Sophie faced the world of solids for the first time. Unfortunately, a bout of gastro followed by a mouth virus led her to lose her ability to drink from a bottle. I often think back to how she would protest pauses during feeding, only for her to now stare at the bottle as if confused. Although she managed purees, the majority of her nourishment came from the NG tube, especially on her sleepier days. Year two of her life saw us shift from rescuing her five times a day to managing an enduring count of five rescues throughout the year. Daily seizures became part of our routine, but we learned to manage them, with her rescue plan set for prolonged seizures or clusters. Eventually, I sought a gastrostomy tube, weary of the NG tube and Sophie’s frustration with the frequent changes. After waiting months to see the gastroenterologists, and countless calls to check in, we were able to schedule surgery. It went well, but she faced complications afterward, including a double ear infection that led to more seizures, resulting in a three-day hospitalization in a coma. Today, Sophie is off the ketogenic diet and on a medically prescribed formula. While she still doesn’t drink from a bottle, the challenges of the past haven’t deterred us. Though her time in the coma has left her with lung and swallowing issues, I do not regret the surgery. We manage the occasional irritation around the gastrostomy site, treating and caring for it diligently. Food is now fun for Sophie; she is thriving and gaining weight since leaving keto and after the surgery. Through every hurdle, her spirit shines, reminding us of the strength she possesses.
Despite this, Sophie adapted to bottles, but her condition worsened. Days were often spent oscillating between seizures and sleep, either from her usual medications or rescue meds. On several heartbreaking occasions, we had to rescue her multiple times in a single day. From the outset, I committed to learning how to manage her NG tube; I wasn’t leaving the hospital without that knowledge. Sophie’s sensitive skin required frequent changes of her tube's placement to prevent sores and infections. As I navigated through these challenges, Sophie had a 29-hour seizure when she was six months old. Doctors advised me to prepare for the worst, but I remained steadfast, and within just 48 hours, I had her drinking again. We introduced a new medication that provided some relief, but after that hospitalization, I insisted on getting a feeding pump. Gravity feeding six times a day with three other children to care for wasn’t sustainable. At eleven months, Sophie faced the world of solids for the first time. Unfortunately, a bout of gastro followed by a mouth virus led her to lose her ability to drink from a bottle. I often think back to how she would protest pauses during feeding, only for her to now stare at the bottle as if confused. Although she managed purees, the majority of her nourishment came from the NG tube, especially on her sleepier days. Year two of her life saw us shift from rescuing her five times a day to managing an enduring count of five rescues throughout the year. Daily seizures became part of our routine, but we learned to manage them, with her rescue plan set for prolonged seizures or clusters. Eventually, I sought a gastrostomy tube, weary of the NG tube and Sophie’s frustration with the frequent changes. After waiting months to see the gastroenterologists, and countless calls to check in, we were able to schedule surgery. It went well, but she faced complications afterward, including a double ear infection that led to more seizures, resulting in a three-day hospitalization in a coma. Today, Sophie is off the ketogenic diet and on a medically prescribed formula. While she still doesn’t drink from a bottle, the challenges of the past haven’t deterred us. Though her time in the coma has left her with lung and swallowing issues, I do not regret the surgery. We manage the occasional irritation around the gastrostomy site, treating and caring for it diligently. Food is now fun for Sophie; she is thriving and gaining weight since leaving keto and after the surgery. Through every hurdle, her spirit shines, reminding us of the strength she possesses.
Story contributed by Kymberley; January 2026
Todd's Story
The Tube in My Flesh
Some experiences defy description. Feeding tubes (along with the reason for them, and the realities that come with them) are among such word-resisting circumstances. Still, despite the arduousness of the task, I will make the attempt.
My Internal StruggleNine months ago, I got my G-tube. I readily confess it took an extraordinarily long time to agree to it. The mere thought of having one inserted into my increasingly frail body was, in and of itself, traumatic. Percutaneous Endoscopic Gastrostomy—the clinical name—forced me to confront my life-long, merciless, unrelenting enemy: failing flesh. Of course, everyone’s body is subject to decay; no one is exempt. Some bodies, though, break down faster than others. Mine just seems to be on fast-forward.
For the longest time, I dismissed enteral feeding. I hated the idea. It diminished me. It reviled my dignity, my identity, my sense of being human. Ah, pride! We are slow to kill it, and it is fast to keep us. So, I chose risk instead. I chose to eat, to swallow, to drink—knowing I could choke or aspirate—because it mattered to me. Food mattered. Call it foolish if you want. I won’t. Food is life: the taste, the ritual, the pleasure, the longing. Food is a social event. Name one occasion that does not involve food! Food also has spiritual associations – How does one take part in the Lord’s Supper without swallowing bread?
In my mind, saying yes to the tube equalled surrender. Another loss. Another line crossed. Another confirmation that cystinosis was doing exactly what the doctors warned it would do. That reality stood in front of me as a massive, fixed object. A mountain of the mind? I could not go around it. I could not fly above it. All I could do was face it. And for those who live with a body in constant decline, you know the grief—because losing the ability to swallow isn’t just medical. It’s personal. Deeply personal. It changes everything.
A feeding tube was something I had been avoiding for years, but I could no longer do so. Dysphagia won the day. Enough was enough.
My Internal StruggleNine months ago, I got my G-tube. I readily confess it took an extraordinarily long time to agree to it. The mere thought of having one inserted into my increasingly frail body was, in and of itself, traumatic. Percutaneous Endoscopic Gastrostomy—the clinical name—forced me to confront my life-long, merciless, unrelenting enemy: failing flesh. Of course, everyone’s body is subject to decay; no one is exempt. Some bodies, though, break down faster than others. Mine just seems to be on fast-forward.
For the longest time, I dismissed enteral feeding. I hated the idea. It diminished me. It reviled my dignity, my identity, my sense of being human. Ah, pride! We are slow to kill it, and it is fast to keep us. So, I chose risk instead. I chose to eat, to swallow, to drink—knowing I could choke or aspirate—because it mattered to me. Food mattered. Call it foolish if you want. I won’t. Food is life: the taste, the ritual, the pleasure, the longing. Food is a social event. Name one occasion that does not involve food! Food also has spiritual associations – How does one take part in the Lord’s Supper without swallowing bread?
In my mind, saying yes to the tube equalled surrender. Another loss. Another line crossed. Another confirmation that cystinosis was doing exactly what the doctors warned it would do. That reality stood in front of me as a massive, fixed object. A mountain of the mind? I could not go around it. I could not fly above it. All I could do was face it. And for those who live with a body in constant decline, you know the grief—because losing the ability to swallow isn’t just medical. It’s personal. Deeply personal. It changes everything.
A feeding tube was something I had been avoiding for years, but I could no longer do so. Dysphagia won the day. Enough was enough.
“My heart and my flesh fail, But God is the rock of my heart and my portion forever” (Ps. 73:26).
My Eventual SurrenderSo, there I was lying on a table in the diagnostic imaging room of an area hospital. Due to my degenerative disease, breathing is difficult when lying on my back. A respiratory therapist consequently stood beside me, holding a BiPAP mask over my mouth. I recall a team of scrub-donned medical pros efficiently getting everything ready for the insertion. Someone then paused to tell me the preparation takes longer than the actual procedure. Indeed. Time stopped marching, though my fifty-nine-year-old heart kept racing! At one point, I remembered some advice. “Just remember to breathe through it and you’ll be fine,” the Facebook poster wrote. Good counsel as it turned out. I commend it to all who require a procedure without general anesthesia!
Eventually, the doc in charge came alongside me, introduced himself, and began to speak of the risks involved during g-tube placement. “You tell me these things now?” I thought to myself. Irritation and fear welled up from deep inside me. Doubts began to flood my mind. “This is all wrong,” I thought uncontrollably. But I was committed to the intervention, knowing deep in my soul I was in good hands.
As the preparations continued and my stress levels grew, an old, well-known hymn comforted me. “Tho Satan should buffet, though trials should come, let this blest assurance control: That Christ has regarded my helpless estate, and has shed his own blood for my soul.” To manage my troubled heart, I silently rehearsed these words. Though my faith does not remove hardship, it surely informs it, putting momentary trials of all kinds into perspective. Whatever the outcome, I was confident God held me firmly in his tender grip.
After sniffing some drops to freeze my airway, an assistant inserted a tube up my nose down my esophagus into my stomach. He kept commanding me, ironically, to swallow. I worked as hard as I could to obey. Very unpleasant but not as terrible as it sounds. “Breathe!” I kept reminding myself. Eventually, the NG tube reached its destination. More waiting. After what seemed to be forever, a puff of air raised my stomach in apposition with my abdominal wall. A needle then delivered the freezing agent into the target area. Two small incisions were followed by the penetration. The doctor in charge pushed the feeding tube into my frozen flesh, watching its progression on the diagnostic imaging equipment. I felt the pushing, but no pain. After a few minutes, the announcement came. “It’s in. All finished.” I was relieved. It was behind me. All went well. No immediate complications.
Eventually, the doc in charge came alongside me, introduced himself, and began to speak of the risks involved during g-tube placement. “You tell me these things now?” I thought to myself. Irritation and fear welled up from deep inside me. Doubts began to flood my mind. “This is all wrong,” I thought uncontrollably. But I was committed to the intervention, knowing deep in my soul I was in good hands.
As the preparations continued and my stress levels grew, an old, well-known hymn comforted me. “Tho Satan should buffet, though trials should come, let this blest assurance control: That Christ has regarded my helpless estate, and has shed his own blood for my soul.” To manage my troubled heart, I silently rehearsed these words. Though my faith does not remove hardship, it surely informs it, putting momentary trials of all kinds into perspective. Whatever the outcome, I was confident God held me firmly in his tender grip.
After sniffing some drops to freeze my airway, an assistant inserted a tube up my nose down my esophagus into my stomach. He kept commanding me, ironically, to swallow. I worked as hard as I could to obey. Very unpleasant but not as terrible as it sounds. “Breathe!” I kept reminding myself. Eventually, the NG tube reached its destination. More waiting. After what seemed to be forever, a puff of air raised my stomach in apposition with my abdominal wall. A needle then delivered the freezing agent into the target area. Two small incisions were followed by the penetration. The doctor in charge pushed the feeding tube into my frozen flesh, watching its progression on the diagnostic imaging equipment. I felt the pushing, but no pain. After a few minutes, the announcement came. “It’s in. All finished.” I was relieved. It was behind me. All went well. No immediate complications.
A Serious SicknessSo, what changed my mind? Why did I give in to what I feared?
On December 12, 2024, after being deep suctioned in an ambulance, throat swabbed at the local emergency department, then ambulanced again to another hospital for admission, we found out why I was extraordinarily phlegmy and my limited ability to swallow reduced to zero: I was RSV positive. Total surprise quickly gave way to complete mystery. Due to my immunosuppression, we have always been vigilant to avoid viruses and bacteria of all kinds. Moreover, the recent COVID pandemic reminded us of the need for diligent viral control regimen in our home. To our knowledge, no one in our tiny social ‘bubble’ had RSV. How the virus infected me is still a head-scratcher.
Twenty days of recovery followed. It was rough. No medical interventions were available. No silver bullet for RSV infection. No magic potion. The treatment plan was simple. The doctors ordered time and support. My wife contacted my cystinosis specialist. With every other setback, he had always been a voice of hope armed with various treatment options. But this time he simply told her to relay me a message. “Tell the old guy I will be praying for him,” he said. Nothing could define the gravity of the moment more clearly. Because of my specialists’ opinions, we had long since known a virus could be the instrumental cause of my death. A viral infection from which I was too weak to recover would be the dagger that served as my escape from this broken body. Would this be the one?
Obviously, the answer was no. RSV was not the one. By the grace of God, I recovered. But the twenty days in hospital served as a giant, painful kick in the pants. End of life stuff. Goals of care. If needed, to CPR or not to CPR? To ICU or not to ICU? Tough stuff. After fifty-eight years of fighting an incurable, degenerative disease, having been expected to die before age thirteen, renal transplanted at age thirteen, suffering a full lung collapse at age fifty-two, the daily fight with other complications that profoundly and immeasurably reduce my quality of life, and now experiencing a weakness I had never known before, why continue? Why prolong the misery?
The staff was great. The room was small; I called it a shoebox. My shoebox. Naturally, my isolation was often interrupted. Intravenous insertions and fluids, morning blood draws, constant respiratory therapies designed to keep my airway moist, night checks for vital sign monitoring, health aides for toileting help (night and day), visits from physiotherapists and respiratory therapists, and of course, the doctors paraded in and out, donning and doffing personal protective equipment.
But my most anticipated visitor/activity of the day was also the most stressful. It was, of course, mealtime. Nothing broke the monotony of long days in hospital like breakfast, lunch, and supper. And nothing could be more pleasurable! The fragrance of food coming down the hallway was always a welcome sensation. However, old habits die hard. I was still thinking as though I was many years younger with far less swallowing difficulty. And so, as per my normal pre-RSV turn of event, the joy of food soon diminished. And even though a nursing aid spoon fed me, stress soon overwhelmed me. I always felt rushed, sensing my help's growing impatience. I understood, of course, having seen nurses rushing about during previous hospital admissions. And so, the usual pattern developed: frustration; a pre-mature “Thank you. >>cough<< I’m finished now;” sometimes hungry still; left alone; disappointment; isolation.
Eventually, somehow, I got stronger. The respiratory therapies were effective. I managed to expel the mucous build-up lodged in my weakened upper airway. It was an exhausting task. Beyond exhausting really. With some help to safely sit in a wheelchair, I was eventually strong enough to get to a hospital floor window. A big window. Many windows. After so long in isolation, the space seemed as if an observatory. To the south, the prairie outskirts of the city were in view. The western windows boasted a far more glorious display. In the foreground, the city sprawled. In the background, the majestic, snow-covered Canadian Rocky Mountain peaks demanded my attention. They drew me out of my shoebox. In doing so, I exercised. With each passing day, I got stronger.
I hunt for words to describe the growing sense of hope I knew. I am not a winter lover, but the scene at the window was reason to make the effort to return daily. I was determined to beat RSV and get home. There was talk of moving to a rehabilitation facility, but I would have none of that. So, I worked hard, exercising, moving as much as I was able, getting out of and staying out of bed if only to sit in a chair.
Recovery required strength, and strength requires energy, and energy comes from food. During this hospitalization I was, somehow, able to get enough food in me to recover. But the ordeal compelled me to ask, “What about next time?” No longer an if there is a next time, but when. It was time to deal with the issue. No more running from it. So, discharged on January 1, 2025. G-tubed in April 2025.
On December 12, 2024, after being deep suctioned in an ambulance, throat swabbed at the local emergency department, then ambulanced again to another hospital for admission, we found out why I was extraordinarily phlegmy and my limited ability to swallow reduced to zero: I was RSV positive. Total surprise quickly gave way to complete mystery. Due to my immunosuppression, we have always been vigilant to avoid viruses and bacteria of all kinds. Moreover, the recent COVID pandemic reminded us of the need for diligent viral control regimen in our home. To our knowledge, no one in our tiny social ‘bubble’ had RSV. How the virus infected me is still a head-scratcher.
Twenty days of recovery followed. It was rough. No medical interventions were available. No silver bullet for RSV infection. No magic potion. The treatment plan was simple. The doctors ordered time and support. My wife contacted my cystinosis specialist. With every other setback, he had always been a voice of hope armed with various treatment options. But this time he simply told her to relay me a message. “Tell the old guy I will be praying for him,” he said. Nothing could define the gravity of the moment more clearly. Because of my specialists’ opinions, we had long since known a virus could be the instrumental cause of my death. A viral infection from which I was too weak to recover would be the dagger that served as my escape from this broken body. Would this be the one?
Obviously, the answer was no. RSV was not the one. By the grace of God, I recovered. But the twenty days in hospital served as a giant, painful kick in the pants. End of life stuff. Goals of care. If needed, to CPR or not to CPR? To ICU or not to ICU? Tough stuff. After fifty-eight years of fighting an incurable, degenerative disease, having been expected to die before age thirteen, renal transplanted at age thirteen, suffering a full lung collapse at age fifty-two, the daily fight with other complications that profoundly and immeasurably reduce my quality of life, and now experiencing a weakness I had never known before, why continue? Why prolong the misery?
The staff was great. The room was small; I called it a shoebox. My shoebox. Naturally, my isolation was often interrupted. Intravenous insertions and fluids, morning blood draws, constant respiratory therapies designed to keep my airway moist, night checks for vital sign monitoring, health aides for toileting help (night and day), visits from physiotherapists and respiratory therapists, and of course, the doctors paraded in and out, donning and doffing personal protective equipment.
But my most anticipated visitor/activity of the day was also the most stressful. It was, of course, mealtime. Nothing broke the monotony of long days in hospital like breakfast, lunch, and supper. And nothing could be more pleasurable! The fragrance of food coming down the hallway was always a welcome sensation. However, old habits die hard. I was still thinking as though I was many years younger with far less swallowing difficulty. And so, as per my normal pre-RSV turn of event, the joy of food soon diminished. And even though a nursing aid spoon fed me, stress soon overwhelmed me. I always felt rushed, sensing my help's growing impatience. I understood, of course, having seen nurses rushing about during previous hospital admissions. And so, the usual pattern developed: frustration; a pre-mature “Thank you. >>cough<< I’m finished now;” sometimes hungry still; left alone; disappointment; isolation.
Eventually, somehow, I got stronger. The respiratory therapies were effective. I managed to expel the mucous build-up lodged in my weakened upper airway. It was an exhausting task. Beyond exhausting really. With some help to safely sit in a wheelchair, I was eventually strong enough to get to a hospital floor window. A big window. Many windows. After so long in isolation, the space seemed as if an observatory. To the south, the prairie outskirts of the city were in view. The western windows boasted a far more glorious display. In the foreground, the city sprawled. In the background, the majestic, snow-covered Canadian Rocky Mountain peaks demanded my attention. They drew me out of my shoebox. In doing so, I exercised. With each passing day, I got stronger.
I hunt for words to describe the growing sense of hope I knew. I am not a winter lover, but the scene at the window was reason to make the effort to return daily. I was determined to beat RSV and get home. There was talk of moving to a rehabilitation facility, but I would have none of that. So, I worked hard, exercising, moving as much as I was able, getting out of and staying out of bed if only to sit in a chair.
Recovery required strength, and strength requires energy, and energy comes from food. During this hospitalization I was, somehow, able to get enough food in me to recover. But the ordeal compelled me to ask, “What about next time?” No longer an if there is a next time, but when. It was time to deal with the issue. No more running from it. So, discharged on January 1, 2025. G-tubed in April 2025.
A Growing AwarenessBefore briefly explaining the cause of my swallowing difficulty, I need to share one more reason I ultimately received a G-tube.
For years leading up to my RSV hospitalization, my faithful, loving wife did everything she could to prepare meals I was able to swallow. She poured tremendous thought, research, and care into creating a nutrition-packed menu tailored to my needs. It was time-consuming work—and time and energy are precious commodities, especially when you are also the breadwinner.
Over the years, her exhaustion steadily grew. Something had to change. I was forced to confront what I could not climb over, could not go around, nor fly past. I had to face it—and then go through it. So, I did.
My wife did far more than most would ever think to do. Many would have walked away long ago, but not my Bevy. Thank you, sweetheart, for walking through this with me—for supporting me, caring for me, and loving me so much. May our God reward you accordingly.
When fighting a chronic, degenerative disease, we must be aware of the impact our illness has on those around us, especially those who live with us. Caregiver burnout is real.
Cystinosis: The Root ReasonAt fifty-nine, I am the oldest Canadian living with cystinosis. With about 2,000 known cases worldwide, the disease is exceptionally rare. An incurable lysosomal storage disorder, cystinosis is caused by the absence of a transporter protein responsible for removing the amino acid cystine from cells. Without that process, cystine accumulates to toxic levels. Over time, these deposits damage cells and lead to widespread organ failure. The kidneys typically fail first; without transplantation, dialysis becomes inevitable. Five days after my thirteenth birthday, my mother gave me one of her kidneys. She was thirty-four. That was forty-six years ago.
Longevity in cystinosis comes at a cost. Even with modern cystine-depleting therapies, I now live with photophobia, end-stage renal disease, absent thyroid function, compromised adrenal glands, cystine-damaged corneas, reduced lung capacity and respiratory effort, decreasing bone density, skeletal abnormalities, severely reduced speech ability, and profound muscle wasting. I am one fine medical mess!
Muscle loss is life-altering. It steals mobility and independence, confining patients to walkers and wheelchairs. It weakens the voice, turning speech into a frustrating effort. Having personal knowledge of every complication listed above, there are days when I would scream—if only I could.
The complications of cystinosis are profoundly isolating. Its sufferers are pushed to the margins of life—banned, as it were, from the playing field. Aging adult patients become spectators, placed on the team’s injured list. My limited ability to speak enforces that isolation, acting like a prison guard dutifully standing watch at the jail cell of my body.
Among the most devastating consequences of cystinosis is dysphagia. Over time, the disease damages the neuromuscular complex responsible for swallowing; both voluntary and smooth muscles progressively fail. As a result—bringing us back to the story shared earlier—I am now dependent on a gastrostomy tube: a silicone straw that has become my literal thorn in the flesh.
I gave my tube a name: Baby Gus. “Gus” is short for esophagus; “Baby” because it is low-profile, not a dangler. My wife and caregivers laugh—and that is precisely the point. Laughter is good for the soul.
Baby Gus has become a symbol of the disease itself: intrusive, relentless, and oddly human. Oddly human? Yes. Like an infant, Baby Gus requires daily care. And, like my caregivers, Gus is essential to my survival, providing what I need every day. I do not want Baby Gus’s help—but I do need it. I am learning to live with the tension between not wanting help and needing help for almost everything.
While cystinosis has been life-altering, the feeding tube has—thus far—been life-changing. Ensuring adequate nutrition as well as hydration is no longer a daily crisis. The pressure is gone. My days are no longer consumed by the exhausting effort of choking down a single meal. I am free to read, write if I feel well enough, or simply watch television.
Mealtimes are no longer dramatic. I sit while a caregiver prepares the formula, hangs the bag on the IV pole, connects the tubing, flushes the port, and opens the flow into my stomach. Simple. Nutrition goes where it needs to go. No danger of choking. No risk of aspiration. No hurried spoon-feeding by someone pressed for time. No fights with forks. No need to worry about needing suction.
Perfect? Not by a long shot.
I do not want this. I need it. Like sitting—which I do most of the time—feeding has become another passive act. Once again, not ideal.
There is no happy conclusion here. As with every loss in life, the loss of eating simply means learning to live without something intimate, personal, and essential. Consider the amputee: he must learn to live with a limp. Food, and everything that surrounds it, has been cut out of my life. Living with dysphagia—even with a G-tube—is one of my limps.
Still, considering everything, I am glad I have Baby Gus. It was a good decision. Undeniably, the procedure itself was traumatic. Yet it is equally undeniable that my quality of life has improved. There have been no complications, aside from minor granulation—normal and easily treated. And just as important is what this has meant for my wife. She no longer carries the crushing burden of an increasingly impossible task: keeping me from starving to death.
My heart and my flesh may fail. Indeed, they have. It will not shock you: due to my various distresses and afflictions, bouts of deep discouragement chase and occasionally overtake me. But despite the tiresome, exhausting, lifelong trial, God – the God who was, and is, and is to come– is my strength. He Himself, the Almighty who changes not and fails not, is the rock of my heart and my portion forever. Upon Him shall I forever feed and be satisfied—even though now, for a time, I know an affliction that is but momentary.
My heart and my flesh may fail. Indeed, they have. It will not shock you: due to my various distresses and afflictions, bouts of deep discouragement chase and occasionally overtake me. But despite the tiresome, exhausting, lifelong trial, God – the God who was, and is, and is to come– is my strength. He Himself, the Almighty who changes not and fails not, is the rock of my heart and my portion forever. Upon Him shall I forever feed and be satisfied—even though now, for a time, I know an affliction that is but momentary.
Story contributed by Todd; January 2026
Find out more about cystinosis from The Australian Cystinosis Foundation.
Tyler's Story
This is Tyler, he is 7 years old and this is only a small part of his feeding story. Tyler is our third child and our medically complex child that threw us into the deep end of parenting a child with additional needs. A NICU stay, a diagnosis at 7 days old, delayed milestones, therapies, medical appointments and the unknown all became our new reality overnight. Tyler’s journey to get to a feeding tube was hard and the advocating to try and be heard was exhausting. Right from the start of what should have been a “normal” solids adventure at 6 months of age, we encountered problems. An oral motor delay meant choking on food as his cheeks would fill up, aversion to texture became worse and the coldness/hotness of foods was such a struggle that Tyler would just cry in the highchair, mealtimes were horrible for him.
It wasn’t until 14 months of age that things really took a turn for the worse. Tyler started on a nutritional supplement formula and it was like a switch flicked and he became so unwell essentially overnight. He was weighed weekly and it was always another loss and no progression, he vomited multiple times a day, to the point that his oldest sister who was only 3 years old taught herself to turn on the shower as soon as Tyler vomited because she had watched me do it so many times, a responsibility no sibling should feel. Tyler stopped growing and gaining weight for 4 whole years, my Mum heart was broken.
At breaking point, I was grateful for the three woman who heard me, Tyler’s first speech therapist, his GP and dietitian, no one listened when I said to medical professionals that something was wrong. I owe these three ladies that believed in me my sanity and most importantly Tyler’s growth. They could see that something was wrong just like I did. It meant that I kept turning up to medical appointment, after medical appointment, and kept on taking videos and photos. I was exhausted, but my Mum gut knew it wasn’t normal and so did those three women, with them we started our new normal with a few speed bumps that has got Tyler where he is today!
At 4 years old Tyler only source of nutrition was the nutritional supplement formula through a baby's bottle, he didn’t tolerate it and the weekly weigh ins where defeating showing the “plan” was failing. After continuous advocating, sleepless nights, and cries for help, Tyler got his G tube (gastrostomy tube) in November 2022 at 4 years of age. With the help of Tyler’s dietitian, I blended the meals Tyler needed which were high calorie meals through his G tube.
Finally, he was gaining some weight with the G tube but that soon plateaued off, and he started losing weight again. In April 2025 Tyler got his GJ tube (gastric-jejunal tube). This has been life changing! Tyler is formula feed through the J and blend feed through the G. Tyler has gained weight, kept the weight on and is thriving. It is the perfect combination for our little boy who now goes to school and hits new heights everyday - we are so proud of him! An eventual diagnosis of hypermobility spectrum disorder (HSD), mast cell activation syndrome (MCAS), gastroparesis and dysmotility finally explained some of the issues Tyler was having around eating/feeding and weight.
I want to finish this snapshot into Tyler by saying that life with a feeding tube isn’t a bad thing, and for Tyler, his ‘Mickey’, as he calls his tube, has only added onto his life. At first the unknown can be scary, but the tube feeding community truly is very open and friendly. Plus, to anyone out there still advocating, knowing that there is something wrong with your child or yourself, keep pushing, and trust yourself!
Story contributed by Emma; January 2026
Bella's Story
My feeding tube journey began back in 2020. When COVID hit I started having moderate-severe gastrointestinal and bowel issues. I was constantly fighting with doctors to get them to believe me but was always dismissed as being anxious or on my period. I was a university student living across the country from my family and my health was rapidly declining.
In late 2021 I finally found a doctor who would listen and I was referred for a gastric-emptying study which then led to a Gastroparesis diagnosis. After multiple failed medication trials and back-to-back emergency room visits, a decision was made to admit me and trial an NG tube in September 2022. The tube lasted all of 6 hours before it had to be removed.
The next day an NJ tube was placed which remained in situ for another 4 months. Going to university and living in student accommodation with a silicone tube taped to my face took quite a physical and mental toll.
In December of 2022 I finally had a PEG-J placed as we realised, I was going to need long-term treatment.
It’s difficult living with a medical device that has left me with unending trauma and simultaneously keeps me alive. It’s difficult to live with, but without it I wouldn’t be working, studying or advocating for people like me. The strange looks I get walking around with tubing hanging out of my clothes or ‘drinking’ by attaching a syringe to a tube in my abdomen can make me extremely self-conscious but I have no other choice.
My tube makes life hard, but it gives me a chance. I’ve got a long and difficult journey still ahead of me but I’ll get through it with my support system.
Story contributed by Bella; January 2025
Kaitlin's Story
My name is Kaitlin, and I’m 30 years old. This is a brief overview of my journey, with some important “tubie” facts along the way.
Like most of us living with a feeding tube, this was not a decision made lightly. I was born with a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS). EDS affects 80% of your body’s connective tissues, so it can cause problems in virtually any system. It’s not just about being “flexible,” as some people think—it’s a complex, multifaceted condition that’s difficult to navigate. Like all illnesses, EDS operates on a scale: for some, the symptoms are mild; for others, like me, the pain and discomfort can be debilitating. On top of EDS, I also live with multiple autoimmune diseases, POTS, MCAS, gastroparesis, vascular compression syndromes, visceral hypersensitivity, and chronic pain. And that’s just the beginning of the list.
My first feeding tube, an NJT (nasal jejunal tube), was placed almost two years ago after severe weight loss, constant pain, vomiting, and a gastric emptying study that showed a significant delay. We thought a brief hiatus for my stomach—six months max—would give it the rest it needed. In March 2024, I underwent surgery to address what we believed was the worst of my vascular compressions: SMAS (Superior Mesenteric Artery Syndrome). Unfortunately, my “bendy” connective tissue caused the surgery to fail, and the subsequent complications only worsened the issues. In September 2024, it was decided I needed both a gastrostomy and a jejunostomy tube.
I thought I had prepared myself. I was ready for the pain, the recovery, the granulation tissue, and the supplies. But there was one thing I wasn’t prepared for: the mental and emotional adjustment. The comments from those around me were often more hurtful than helpful. “Don’t let me see them, they’re gross.” While I understood their discomfort, what they didn’t realize was how much their words stung. It wasn’t just a tube—it was a constant reminder of my struggles, my daily fight.
In the first few weeks post-surgery, I felt immense regret. I wondered if I had “deformed” my body, and while others saw it as “gross,” they couldn’t understand the emotional toll it took on me. I had complications that required three additional hospital admissions, and I had to grieve the life I once knew while learning to embrace my new reality.
I am beyond grateful for the amazing team of medical professionals who support me. Without them, I wouldn’t be writing this today. Four months in, I’m learning to love my tubes. I’ve even bought new clothes to help me adjust. I also ensure my tubie pads match as well! As someone who loves fashion, I’ve found that while I miss what I once looked like, I’m finding myself again through experimenting with different styles. I’ve discovered that clothes with buttons are a godsend for running feeds or fluids on the go, and while most shorts are out (thanks to where my J tube sits on my waistline), I’ve learned that leggings, if sized up for extra stretch, can be both comfortable and functional.
There are still days when I wish I didn’t wake up to the beep of my Nutricia pump, but I also know that I’m incredibly fortunate to have a job I love, where I can contribute and feel a sense of purpose.
To anyone with a feeding tube—whether you’re living it or supporting someone who is—remember this: we are more than our tubes. We are daughters, sisters, mothers, friends, change-makers. We are people who happen to eat through a tube. And while you may not like looking at it, I don’t particularly enjoy watching you eat with your mouth open. But we’re all different, just trying to thrive, not just survive.
Here are some fun tubie facts:
- Yes, I have a feeding tube, but I loveee Expresso martinis.
- Yes, I have a feeding tube, and I am still overweight.
- Yes, I have a feeding tube, and I can still eat food at times.
- Yes, I have a feeding tube, and my favourite part is being able to eat while I sleep.
- Yes, I have a feeding tube, and I crave food constantly—even though I’m not hungry!
- Yes, I have a feeding tube, and I live a fairly normal life for a 30-year-old.
- Yes, I have a feeding tube, and on Wednesdays, I can still wear pink!
- Yes, I have a feeding tube, and I spend a lot of time at doctors' appointments and in the hospital.
- Yes, I have a feeding tube, and I can still work—work gives me a huge sense of purpose.
- Yes, I have a feeding tube, but I’ve never lost my sense of humour or my ability to throw shade at idiots.
- Yes, I have a feeding tube because my stomach is a useless organ that refuses to cooperate.
- Yes, I have a feeding tube, and I’ll complain about it constantly—but I’m still grateful to be better nourished.
- Yes, I have a feeding tube, and you know what? I rock those tubie pads!
- Yes, I have a feeding tube, but I am not defined by my illness.
Story contributed by Kaitlin; January 2025
Kathryn’s Story
My name is Kathryn and I am an artist and Masters student living with Gastroparesis. I have been tube fed full time full time since 2020 having had feeding tubes on and off the years prior to this.
Adapting to life with a tube can be extremely challenging. I was studying Visual Art full time at TAFE when I had my NG tube placed and I remember being so nervous to attend classes with such a visible medical device. It wasn’t easy at first. Over time I gained confidence in explaining what my feeding tube was for, and how it aided my ability to participate in the world by ensuring I had adequate nutrition while living with illness. During this time art became my outlet, and a place where I could express my lived experience of being tube fed. The highs, the lows, the complications and the achievements it supported me to reach.
I am now in my final year of studying a Masters Degree while also working part time as an artist. One of the most important things for me during this time has been to keep connected with and doing things that I love. Living with a feeding tube and illness, so much of life and identity can be medicalised and dictated by the medical profession. It can take some negotiating and planning, but making sure I’m continuing to participate and engage with the things I love makes the challenges and daily requirements of tube feeding just that little bit easier to cope with.
Life with a feeding tube looks different person to person, visible/invisible, 24hr/intermittent, bolus/pump. The most important thing is finding what works for you and your own life. Life doesn’t stop when tube feeding begins!
Story contributed by Kathryn; January 2025
Luke's Story
Luke was born full term after a standard pregnancy and birth…however as soon as Luke entered the world, he instantly had difficulty breathing and within 4 hours was transferred to the ICU at Sydney Children’s Hospital. He spent his first month of life in hospital where we discovered he had a floppy epiglottis, which was causing a number of problems for Luke. We were able to take him home with a CPAP machine and a feeding tube. Luke’s feeding tube was placed on day 2 of life and now almost 3 and a half years later it is still with us today.
There was more going on with Luke than just a floppy epiglottis and at 16 months old we received his diagnosis…a rare genetic muscular condition. So rare it doesn’t even have a name and Luke is the 6th person worldwide to be diagnosed. Having such a rare condition means there is minimal information on how his condition will impact his life. What we do know is that it affects all of Lukes muscles but has the biggest impact on the smaller muscles used for swallowing and speaking. Two months before Luke turned 2, we decided to introduce him to a blended diet. We knew and accepted Luke’s tube was going to be around for a long time and I really wanted him to be able to access whole foods, rather than just formula alone. It also gave me a chance as his Mum to be able to cook for him, share family meals and even have some of his birthday cake! It’s been one of the best decisions we have made for him.
We are so grateful for Luke’s feeding tube - it literally saved his life and keeps his airway safe. Today, Luke is a very happy 3 and a half year old. He attends an inclusive daycare 2 times a week as well as therapy about 5 times a fortnight. His life definitely isn’t that of an average 3 year old but he makes the most of it and it doesn’t bring him down.
Story contributed by Eliana (Luke's mum); January 2025
Olivia's Story
Hello, I am Olivia! I’m 19 years old and live in Adelaide. Since I was born, my experiences with feeding tubes have taken many forms. I have learnt so much about what life as a Tubie can look like.
What does it look like? It looks different for everyone. There are a variety of types of tubes, reasons people need tubes and uses for tubes such as nutrition, hydration, medication or drainage.
For me, I have a tube because I was born with birth defects including Tracheoesophageal Fistula, Oesophageal Atresia and a Laryngeal Cleft. They caused dysphagia and gastroparesis amongst other things. At different points throughout my journey, I have had a Trans-anastomotic Tube (a Nasogastric tube that runs through a surgical repair site of the oesophagus), Gastrostomy tube, Nasogastric tube, and currently a Gastro-Jejunostomy (PEG-J) tube.
Some things I would like others to know:
- We can still live a meaningful life. I have been lucky enough to travel interstate and overseas, completed year 12, play soccer, study at university, work as a youth health advocate and develop strong friendships whilst navigating life with a tube.
- Having a good support network is key. I have found the Tubie community to be a wonderfully supportive group. Simply knowing others who ‘get it’ and have been there, offers sounding boards, support and a group where I am seen for who I am beyond my health conditions.
- The value of having a good care team can’t be understated. It has taken a lot of time, seeking out services that are relevant to me and advocating for myself to find a good network of doctors. But I am now in a place where I have a supportive and knowledgeable healthcare team to support me, so I can focus on living!
- Mental health support can be just as important as physical health supports. Living with a feeding tube and health conditions can affect many parts of our lives beyond just eating and drinking. From body image to other people’s assumptions and comments to grieving our health to living differently to our peers, it is understandable that we may need help with our mental health. For me, mental health supports mean building strong friendships, going on walks and seeing a psychologist, who helps me navigate the ebbs and flows of my life.
Whilst I still have challenging times, I am incredibly grateful for the quality of life that my tube gives me, allowing me to do things that are meaningful to me.
Story contributed by Olivia; January 2025
Oscar's Story
You never imagine, when you first hold your child, that one day they may rely almost entirely on a feeding tube for their nutrition and medication. But life has a way of leading us down unexpected paths, and when that day comes, you adapt, learn, and ultimately become grateful for the medical advancements that keep your child alive and thriving.
Oscar was diagnosed with a rare degenerative disease called Cystinosis, a condition that affects every organ and cell in his body. This complex disorder means he must take over 25 medications throughout the day and night to maintain his electrolyte levels and prevent the build-up of cystine. Managing this condition is a continuous challenge, but the feeding tube has been a life-saving tool that ensures he gets the nutrition and medication he needs. The feeding tube has become an essential part of Oscar’s daily routine. While he can eat small amounts of food orally, his condition severely limits his appetite, making it nearly impossible for him to consume enough nutrients on his own.
To ensure he gets adequate nutrition and support his growth, he relies on three pump-fed meals of blended food administered directly into his stomach via the feeding tube. Beyond nutrition, the feeding tube plays a critical role in managing Oscar’s complex medication regimen. Many of his medications must begiven at precise times, even in the middle of the night. Some are essential to maintaining his electrolyte balance, which can drop dangerously low if doses are missed or delayed. Administering medications through the feeding tube ensures accuracy and efficiency, reducing the stress and discomfort of swallowing numerous pills.
The journey with a feeding tube has not been without its challenges. At first, the idea of relying on a tube was overwhelming. Learning how to operate the pump, prepare medications and feeds, and troubleshoot issues has required a lot of patience and resilience. Over time, these once-daunting tasks have become second nature and our normal. Oscar’s feeding tube is more than a medical device—it is a lifeline. It has allowed him to play, learn, and experience life without being held back by the limitations of his condition. By sharing Oscar’s story, we hope to spread awareness and understanding about feeding tubes, break down any stigmas, encourage support for medical advancements, and inspire other families navigating similar journeys to embrace the tools that give their loved ones the best chance at a fulfilling life.
Story contributed by Jenna (Oscar's mum); February 2025
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Pedro's Story
My name is Pedro Relvas, and I’m a brain tumour survivor who feeds through a tube. My journey with a feeding tube began after a 13-hour life-saving brain surgery at the International Neuroscience Institute (I.N.I.) in Hannover, Germany. The surgery left me unable to swallow, and transitioning to tube feeding became an unexpected and humbling part of my life. While it was initially a challenging adjustment, my feeding tube has become so much more than just a medical device—it’s a symbol of survival, strength, and determination.
After surgery, I could have chosen to stop doing the things I loved, but I didn’t. I learnt that we always have a choice, to work for our circumstances or make our circumstances work for us. My feeding tube has been with me through martial arts training, physical activities, and even one of my proudest achievements—winning the Men’s Masters Classic IFBB National Title. My journey proves that a feeding tube doesn’t limit what you can accomplish. It simply means adapting and finding new ways to achieve your goals.
Throughout this journey, my support network has been my rock. My kids, Kai and Laila, inspire me every single day with their love and resilience, while my partner, Chaya, has been my unwavering pillar of acceptance and encouragement. My close friends have also stood by me, driving me to be the best version of myself. Together, they’ve helped me realize that our battles aren’t meant to be fought alone—our connections are what make us stronger. We may often find ourselves alone in the ring but we have a whole corner watching over us. One of the most profound lessons my feeding tube has taught me is the power of the slight edge principle. It’s about making small, consistent choices that compound into remarkable results over time. Whether it’s pushing through a challenging workout, focusing on my recovery, or staying present for my loved ones, my tube has redefined my understanding of discipline, resilience, and personal growth.
Despite the challenges, I’ve made it my mission to embrace life with gratitude and purpose. Through my personal development business, The iAlpha Project, and my podcast, I share my story to raise awareness about living with a feeding tube and inspire others to see their struggles as opportunities for growth. Vulnerability isn’t a weakness; it’s a source of strength and connection.
Feeding Tube Awareness Week is an opportunity to challenge stereotypes and shine a light on the incredible resilience of the tubie community. I hope my story encourages others to see that a feeding tube doesn’t define us—it empowers us to live life to its fullest.
If you’re living with a feeding tube, remember; you are stronger than you know. This journey may not be the one you expected, but it’s one that can lead to remarkable growth and transformation.
After surgery, I could have chosen to stop doing the things I loved, but I didn’t. I learnt that we always have a choice, to work for our circumstances or make our circumstances work for us. My feeding tube has been with me through martial arts training, physical activities, and even one of my proudest achievements—winning the Men’s Masters Classic IFBB National Title. My journey proves that a feeding tube doesn’t limit what you can accomplish. It simply means adapting and finding new ways to achieve your goals.
Throughout this journey, my support network has been my rock. My kids, Kai and Laila, inspire me every single day with their love and resilience, while my partner, Chaya, has been my unwavering pillar of acceptance and encouragement. My close friends have also stood by me, driving me to be the best version of myself. Together, they’ve helped me realize that our battles aren’t meant to be fought alone—our connections are what make us stronger. We may often find ourselves alone in the ring but we have a whole corner watching over us. One of the most profound lessons my feeding tube has taught me is the power of the slight edge principle. It’s about making small, consistent choices that compound into remarkable results over time. Whether it’s pushing through a challenging workout, focusing on my recovery, or staying present for my loved ones, my tube has redefined my understanding of discipline, resilience, and personal growth.
Despite the challenges, I’ve made it my mission to embrace life with gratitude and purpose. Through my personal development business, The iAlpha Project, and my podcast, I share my story to raise awareness about living with a feeding tube and inspire others to see their struggles as opportunities for growth. Vulnerability isn’t a weakness; it’s a source of strength and connection.
Feeding Tube Awareness Week is an opportunity to challenge stereotypes and shine a light on the incredible resilience of the tubie community. I hope my story encourages others to see that a feeding tube doesn’t define us—it empowers us to live life to its fullest.
If you’re living with a feeding tube, remember; you are stronger than you know. This journey may not be the one you expected, but it’s one that can lead to remarkable growth and transformation.
Story contributed by Pedro; January 2025
Rory's Story
Rory has Noonan syndrome. He was born with heart disease, lung disease and JMML leukaemia. He spent the first year of his life in hospital and 2 1/2 years with oxygen support.
We have been tube feeding for nearly 5 years. Rory is now in remission and he’s started kindergarten and living his best life. He has started to eat a little bit of food by mouth. Rory receives 70% of his nutrition from his PEG nicknamed Geoffrey the G-tube.
This video, made for Feeding Tube Awareness Week, is of Rory living his best blended life.
Story and video contributed by Alex (Rory's mum); February 2025
Samuel's Story
Hi, I'm Samuel! I have had a PEG since I was 3 months old after an acid incident, which affected parts of my mouth. Due to this, I have a structural speech impairment, and require a PEG and tracheostomy (breathing tube) to survive. However, this did not deter my parents from exposing me to a lifestyle that is "as normal as possible". They continued to bring me out of the house as much as possible, preparing all of my feeds and medical devices in advance. They were not afraid of feeding me by the benches, and worked immensely hard to enrol me into a mainstream school despite numerous rejections. The constant exposure to society has made me realised that speaking and eating plays an extremely significant role in one's social life. While my lifestyle is strangely similar to others, it is vastly different due to my impaired speech and tube feeding.
In wanting to explore my own capabilities, I decided to look into my complex medical conditions by learning more about speech pathology. While it started off as a means of self-discovery, speech pathology has opened my eyes to others who have similar challenges. One thing led to another, and here I am, completing my Masters in Speech Pathology at the University of Melbourne, striving to help others with their communication and/or feeding challenges.
Story contributed by Samuel; January 2025
You can also watch a video about Samuel, ‘Acid attack survivor doesn't let his condition define him’, that was featured in The Straits Times here.
Story update: In December 2024 Samuel graduated with a master’s degree in speech pathology from the University of Melbourne and, in 2025, fulfilled his dream of becoming a speech and language therapist at Thye Hua Kwan Moral Charities. Sadly, in June 2025, Samuel was diagnosed with nose cancer and devastatingly passed away shortly after. You can read more in this article in The Straits Times ‘He fought till the end’: Man who survived acid attack as a baby dies of cancer at 26.
