9-year-old who is fed via tube teams up with Elmo to raise awareness of rare condition
A nine-year-old child from Pennsylvania has teamed up with Elmo, the cherished Sesame Street character, to celebrate tube feeding and raise awareness of the rare condition he was born with.
According to the British Specialist Nutrition Association, there are around 40,000 adults and children in the UK who rely on tube feeding, and an estimated 438,000 in the United States, as per the Oley Foundation.
Some of these people will depend on tube feeding because of difficulties swallowing (dysphagia), extreme illness or weakness, tumours in the throat or stomach, or because they may be recovering from bowel blockages or severe Crohn’s disease.
Jaxon Green, who had a kidney transplant and started peritoneal dialysis at just six months old, feeds through a tube because of a rare syndrome affecting his abdomen, testes and bladder.
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The child's condition, medically referred to as Eagle-Barrett Syndrome, is also commonly known as prune belly syndrome, as per Colorado Children’s Hospital.
It is characterised by poorly developed abdominal muscles, undescended testicles, enlarged bladder and an enlarged ureter.
Eagle-Barrett syndrome primarily affects boys, but girls may be affected as well.
Some, like Green, will need a feeding tube fitted due to digestive, growth, or severe medical complications, Cedars Sinai stated.
The syndrome is relatively uncommon, affecting about 1 in 40,000 infants, with symptoms including a wrinkled belly that appears prune-like, underdeveloped organs, and musculoskeletal problems.
Green’s mother, Amy, explained that her son only ate food from about four to six months before he started totally refusing it.
Five and a half years ago, he had a kidney transplant; he now stays tube-fed to ensure that he is healthy enough to transition to eating, as per an interview with People Magazine.
The incoming fourth grader - who claimed his peers had recently been ‘making fun’ of his tube feeding - collaborated with Elmo and Compleat to highlight to others that it's ‘okay to be different’.
In the video, titled ‘What Is Better Than How | A song about tube feeding’, Green is asked by Elmo if he wants to eat with him.
His mother replies on his behalf: “He gets his meals through a feeding tube.”
As per a press release shared with the publication, Compleat said that the video was designed to show that it doesn’t matter how a child eats; what matters is that they are receiving the nourishment that they need.
“Some use forks, some use spoons, some use chopsticks, some use feeding tubes,” reads the YouTube video’s caption.
“Behind every smile in this film is a real family.
“Families navigating doctor appointments, hospital stays, celebrations, milestones, and everyday moments—who generously shared their stories to help more children and families feel seen, understood, and a little less alone.
“We're incredibly grateful to each of them, and to Elmo for helping bring this message of curiosity, kindness, and acceptance to even more people.”
The caption continues, claiming Green’s video is for ‘every tubie, every sibling, every parent, every caregiver, and everyone helping create a world where what makes us different is simply another part of who we are’.
“I have been an advocate for Jaxon from the day he was born, and I wanted to be able to advocate for everybody out there that has a feeding tube,” continued Green’s mum.
“Maybe it will help everybody to understand that it’s just a difference in how you eat,” she says of the campaign. “There is nothing different about Jaxon as a person.”
“If you would meet Jaxon any day, you would never know,” she adds. “They are people who are just like you, they just eat different for whatever reason.”
Following his starring role, Green has said he ‘feels better about going back to school’ and that he is looking forward to learning to play an instrument in music.
Ella Scott