Joel Wilkinson is my son and he was diagnosed with Duchenne Muscular Dystrophy a day before his 3rd birthday.
In short, the condition Duchenne Muscular Dystrophy (DMD) affects every muscle the body and will slowly waste away. Firstly ambience will be lost, followed by the use of other limbs and eventually respiratory and heart failure. Duchenne children are not able to produce adequate levels of the protein Dystrophin due mutations of the Dystrophin gene.
DMD is a rare condition affecting approx 1 in 3600 boys and 1 in a million girls. It can be passed down genetically or as in our case, and approx 30% of cases, a spontaneous mutation can occur. This ultimately means Duchenne can affect any family.
There is currently no cure for Duchenne with families clinging to the hope of a medical breakthrough that can save their boys. Some medical trials are underway to find a cure and we hope Joel can be accepted onto a trial in the coming year.
Young children typically miss the milestones of their peers and have trouble with movement and balance.
Despite various default comments from GP’s regarding different child progress (Many will never deal with a DMD child), we knew something was not right with his movement and lack of activity.
In our case Joel had ‘glue ear’ which pacified us for a short time only with a decision to have his hips tested shortly afterwards. During that assessment a doctor familiar with Muscular Dystrophy referred us to a colleague and slowly we received the diagnosis that changed our world.
We have been trying to raise awareness and fundraise since shortly after Joel’s diagnosis through Joy 4 Joel, an appeal supported by the Life for a Kid Foundation.
Our first need was to adapt our home ensuring the best and most appropriate environment for Joel to live as independent a life as possible.
Joel now has an adapted bedroom and bathroom downstairs which is built ready for a hoist system when required. Doors are widened with slopes for his wheelchair in and out of all entrance/exits.
Joel has ongoing medical testing and monitoring along with numerous therapies that we hope can keep as strong as possible for as long as possible. It really is a race against time for DMD children.
A short history of Run DMD and Joy 4 Joel.
As Joy 4 Joel we have organised lots of events over the last 5 years.
It all started with Life for a Kid Foundation arranging a charity rugby match. Since then we have hosted several Golf and Football Tournaments. A world record loom band attempt, a ladies night, a hypnotist night, a superhero walk and more recently a Gameshow evening. We also host a DMD Ball with another DMD family with the next event in May 2020. Joel has also been supported by the Nice 2 B Nice charity with a lovely surprise day and a stay at Phoebe’s Lodge..
Run DMD has been a growing part of our efforts since 2015 when I came up with the Run DMD idea.
My colleague and friend Mr Chris Nicklin wanted to do something to support us upon hearing of Joel’s diagnosis. At the tender age of 45 he decided to support me in running the Hull Marathon 2015. He completed the ‘Hull Triple Crown’ of 10K, Half Marathon and Hull Marathon that year.
In 2016 he again supported along with other colleagues as a team of 4 entered the relay to run with me.
In 2017 we grew further with 22 runners – teams of 4 and a team of 2. All superhero themed – coloured shirts to match Joel’s favourite superheroes. Team Wolverine / Team Hulk / Team Batman etc…
In 2018 the wonderful guys at Run Kingswood Run joined us with teams of 4 and 2 helping run DMD grow to 38 runners
In 2019 we have 67 runners (so far).
We hope the many coloured shirts can play a small part in helping raise awareness and support.