Joseph was diagnosed with Duchenne muscular dystrophy in 2016, when he was just four years old. His family is originally from Yorkshire and now lives on the Isle of Anglesey with his father, Gareth, his mother, Katherine, and his older sister, Elizabeth.
Joseph's Journey
The first signs that something wasn’t right was that Joseph struggled to get up from the floor easily, walked on his tiptoes, and couldn’t jump or run as well as we expected.
After we raised our concerns, our family GP referred Joseph to Alder Hey Hospital in Liverpool. Blood tests and a muscle biopsy confirmed the diagnosis.
When we received the news, I was devastated.
As parents, Gareth and I felt as though our world had completely changed. For a long time, we felt numb. The hopes we had for Joseph’s future seemed to disappear, and we were left feeling scared and helpless.
Joseph is a huge Disney fan and loves swimming, music, and computer games such as Minecraft and Roblox. He was selected for steroid treatment in 2017 and also receives six-monthly bisphosphonate treatment to help with his bone strength. He takes medication for epilepsy and was diagnosed with autism in 2019.
We were introduced to Muscular Dystrophy UK by the regional care advisor at our hospital. Since then, the charity has supported us with information about Duchenne and with advice on housing adaptations to meet Joseph’s needs.
We decided to get involved in fundraising to help pay for research into treatments for Duchenne muscular dystrophy. Gareth and I have completed a one-mile zipwire challenge at Zip World in North Wales and a dive with sharks at the Blue Planet Aquarium in Ellesmere Port, Cheshire.
Elizabeth and I have also completed an indoor skydive at iFly in Manchester.
Raising awareness of this condition is so important, but raising funds to help progress research is also vital. We hope we can encourage friends and family to join us on Joseph’s Journey. If everyone gets involved, we can all make a difference together.
We set up our own family fund and have encouraged other family members, friends and our local community to join us in fundraising for treatments for Duchenne muscular dystrophy.
We’re so grateful for the welfare part of the family fund as we recently used this to get Joseph’s mobile hoist serviced and buy a new battery. It really does make all the difference.
Net proceeds from our fundraising will be split 80% towards Muscular Dystrophy UK’s research into Duchenne muscular dystrophy and 20% towards Joseph’s welfare needs.
You can follow Joseph’s Journey on Facebook.
