Rohan was diagnosed with Duchenne muscular dystrophy in July 2025, aged four. His parents Tom and Nikki set up a Family Fund to raise money for research into the condition and to help support other families in a similar situation.
Riders for Rohan
Rohan is a happy, cheeky, opinionated kid. In many ways, he’s just like any other young boy his age – he enjoys counting and playing with Lego and Hot Wheels cars. But he’s also living with a condition that we know will increasingly impact his life.
We knew something wasn’t quite right when Rohan started missing developmental milestones and struggled to physically keep up with his peers. At the age of around three, he couldn’t jump, fell over a lot, and was a lot slower when running with other kids his age.
Initially we just thought he was a bit lazy and would catch up, but when it didn’t improve, we took him to the GP. From there, Rohan was referred to a paediatrician and after various tests he was diagnosed with Duchenne muscular dystrophy six months later, aged four.
The diagnosis came as a real shock. We weren’t aware of the condition and went through a period of feeling stunned. It was like a grieving process really.
Rohan is still very young so doesn’t understand his diagnosis yet, but he knows that his muscles are different. He tires easily, struggles to walk long distances, and can’t always keep up with all the games his friends play.
We know that as Rohan gets older and his muscles deteriorate, he’ll need a wheelchair and more care and support. Eventually, he’ll develop cardiac and respiratory issues, and potentially other conditions. But we’re determined to support him every step of the way and ensure he lives his best life.
Setting up ‘Riders for Rohan’ and fundraising is our way of coming together as a family and with our wider community to support Rohan.
We want to do our bit, in Rohan’s name, to help fund research into Duchenne muscular dystrophy, as well as spreading awareness and supporting other families like ours. So that everyone living with this condition can do everything they want to do in their lives.
