This article about Kyle, first appeared in a 2015 issue of The Information Point newsletter Our World, when his grandmother Darlene, told us about the organisation Tubie Friends.
Tubie Friends was started by a group of mothers in the USA whose children have been or are currently using a feeding tube as a primary source of nutrition and knew, that when a parent is told their child needs a feeding tube or other medical equipment, it can be a scary time for the entire family.
Kyle Miller is 13 years old and lives in Maryland, USA. Diagnosed with X-Linked myotubular myopathy, Kyle has had a trach and feeding tube since he was one month old. He recently received a Tubie Friend as a gift from his grandmother Darlene.
Darlene told The Information Point ‘I found out about Tubie Friends animals on Facebook via another group I belong too. They match a Tubie Friend to each child based on information you provide, such as if they have a trach, feeding tube or pic line’.
‘Tubie Friends are important for children like Kyle as they can connect to them. They give the child a sense of enjoyment knowing other people think about them and try to make things feel natural to them. Kyle’s Tubie Friend was a surprise, he didn’t know I had ordered him one until it came. On receiving it he said “Hey, this dog has a trach and g-tube just like me. This is really awsome”. It was the first time he has gotten something that was so much like him and it makes him feel special. He tells everyone that comes to our house look what I got in the mail’.
‘Kyle named his Tubie Friend Frenchy. The stuffed animal came with a card saying he could choose a name and also the name of the person who had fixed it for him. Kyle names all his things after things he likes. His pet dog’s name is John Deere (JD for short) and he likes french fries – as he was eating them at the time the Tubie Friend arrived it was only natural he name him Frenchy’.
As much as possible Tubie friends mirror a child’s medical interventions to the animal they are receiving, by placing a similar feeding tube, as well as additional medical interventions such as central IV lines, tracheostomy tubes or oxygen cannulas if possible. Additionally, each Tubie Friend comes with a parent letter providing information and listing support groups for feeding tubes.
Tubie Friends were initially intended for people with medical devices and who are developmentally under the age of 18. However, in addition to bringing comfort to a child, Tubie Friends can also be used as a teaching tool for family, friends and caregivers and can be purchased for adults, schools, siblings, caregivers and doctors also.