A TEENAGER revealed how a condition that forced him into a wheelchair just two years ago has made him stronger and led to success in both sports and studies.
Dylan McCarthy was diagnosed with Ehlers Danlos syndrome, which affects the connective tissues, when he was just nine years old.
By age 17, the condition had deteriorated to the extent that he required a wheelchair full-time.
He has since made waves as a senior member of the Irish Wheelchair Basketball team.
The 19-year-old CIT business student also sits on the Junior Board for the Crann Centre in Ovens, which supports people living with Spina Bifida and Hydrocephalus and their families.
His own experience with Ehlers Danlos syndrome began when he was nine years old and struggling with physical activity.
“I was in and out of hospital a lot,” he said.
“They didn’t know what was wrong with me. I was still playing sports but not at the level others were.”
It was to be the start of a long battle for Dylan.
“In 2010 I was diagnosed with Ehlers Danlos syndrome.
“This basically means there is no collagen in my muscles and I get dislocations very easily.
“A lot of people with EDS can live a normal life and only have one or two dislocations that might set them back a tiny bit. My condition is so severe that I could pick up a pen and dislocate my finger.”
The college student’s life changed forever in 2017 when he became a full-time wheelchair user.
“I ended up in the wheelchair because my hips just didn’t have the collagen to hold me anymore. From January 2017 I had to use a wheelchair full-time.
“Trying to adapt to that is hard but you have to get used to it. The first few months were hard. I was lucky in a way that I’d used the chair for part-time use so it wasn’t completely new.”
Dylan spoke of how the Rebel Wheelers-a group he plays wheelchair basketball with-supported him through the difficult period.
“I had been using a wheelchair part-time for long distances before that but it was strange adapting to using it in the house.
“Having to go from using the top shelf to the bottom shelf was a massive change. Rebel Wheelers were great for supporting me during the transition.”
He explained that using the wheelchair part-time as a child prepared him for later life.
“I can remember getting the chair at 10 years old and trying to put the pieces together in my head. The hardest part was getting on with everyday life.
“I had to redirect my whole school route and that was quite difficult. I was adapting for what would be my future.”
Dylan is grateful to benefit from the medical technology his grandfather never experienced.
“It was my mother who realised that the symptoms he had were the same as my own,” he explained.
“They didn’t have the knowledge then to be able to diagnose EDS so it was misdiagnosed as arthritis.
“Even to this day, it’s hard to explain to doctors what it is and how it affects me.
“Sometimes people assume it’s your mindset that holds you back.
“In reality, you are trying to do ten times more than people who have a milder form of the condition. My grandfather passed away years ago from the condition.
“In his situation, they didn’t realise that what was happening to him was affecting his internal organs and didn’t take that into account.”
Dylan said he is making the most of college life and savouring every day.
“I don’t have many big plans for the future right now. I’m so happy with life at the moment that I don’t even want to think about the future. CIT has been great and have helped me with the facilities.
“Anything I need they are there within seconds. I’d love to eventually go into accounting and make a career of that.”
He offered advice to other teenagers adapting to life in a wheelchair.
“I’m not going to lie. The first few months of this were tough.
“There were days where I stayed in bed and didn’t want to eat.
“There were days when I didn’t want to put on a brave face, but once you accept that the wheelchair is part of your life you turn that corner and live a normal life.
“It’s great having my basketball team because they all have their own situation and a story to tell. It reminds me that I have to get on with it, as they did.”