Ethan's story
Meet extraordinary Ethan, a thirteen-year-old with Duchenne muscular dystrophy who knows every single flag in the world!
Ethan lost the ability to walk four years ago, and has been in a wheelchair ever since. Being in a wheelchair takes a physical toll – along with his condition causing muscle tightness and spinal contortion, Ethan developed severe scoliosis, with an 88-degree spinal curvature. He was admitted to hospital for surgery, where they inserted two steel rods to correct the curve of his spine.
Ethan’s dad, Tommy, says “It made a world of difference. Thanks to his incredible surgeon, he can now breathe and eat better, and his posture has greatly improved.
“One of the outcomes of the surgery is that Ethan can no longer bend forward to feed himself. He was aware of this before the procedure and said he would willingly sacrifice that ability if it meant achieving a better quality of life afterwards.”
He worries about not being able to feed himself anymore. It’s a huge adjustment for him. So, seeing him smile meant everything.
Ethan's dad, Tommy
“Ethan was told he’d be going home soon, only for the date to be pushed back again and again. Emotionally, he found it difficult. He felt down and became withdrawn. I was worried because at a certain point, he began zoning out when people tried talking to him.”
Then, they discovered the Hub.
“The moment Ethan met the Therapet who was visiting, he lit up. His sister was able to join him, and they both loved playing with the dog.
“The Hub always had something fun for Ethan to enjoy. He really got a lot out of the visit from zoo specialists, where he learned about an anteater with diabetes.
“He loved playing card games and doing activities. Sam and the volunteers were brilliant with him – they made such a difference. The Hub helped break up his day and took his mind off everything. He still talks about it.”
When not at the Hub, Ethan found distraction elsewhere too. “He especially enjoyed the performers from the Edinburgh Fringe who visited the hospital, particularly a circus act from Singapore that blended humour with gravity-defying tricks. He was rolling with laughter in his wheelchair!
“Another time, a musician came by the ward and played guitar at his bedside. He played ‘Wonderwall’ by Oasis, and, of course, I had to join in. We ended up having a karaoke session right there!
“As a parent, watching your child go through such a life-changing procedure is incredibly tough. He is autistic, so getting him to open up can be challenging. It was such a relief to see him being himself again, chatting away to people.
“You’re constantly worried about how your child is coping mentally. Even though he’s young, Ethan understands that his life has changed in a big way. He worries about not being able to feed himself anymore. It’s a huge adjustment for him. So, seeing him smile meant everything.”
