Jenson Edwards, lives in Buckley in North Wales and was diagnosed with Duchenne muscular dystrophy in February 2016.
Mum Hannah and Dad Craig first realised that something was not quite right with their son when they noticed that Jenson’s legs were not working like they should.
Jenson was finding it difficult to get up easily off the floor and was not able to run around like other children of his age.”
Blood tests were carried out at Wrexham hospital towards the end of 2015 and a diagnosis was confirmed a few months later. His parents describe what happened:
We were absolutely heartbroken. We felt numb and soul destroyed for a long time and were very scared of what the future might hold. Duchenne muscular dystrophy is a rare muscle wasting condition mainly affecting boys. It means that Jenson cannot produce the protein dystrophin and will lose the ability to use the muscles in his body.”
Like many other parents coping with the devastating news, they turned to the internet for further information and, along with advice from the hospital, were put in touch with Muscular Dystrophy UK.
Since coming to terms with Jenson’s diagnosis of Duchenne muscular dystrophy the family, including Jenson’s sisters, fifteen-year-old Yasmin and twelve-year-old Jessica, have all tried to raise awareness of their son’s condition in their local community and have turned to fundraising as a way to get others involved in supporting them.
Since starting their fundraising Hannah and Craig have set up their own website and Facebook group which has attracted hundreds of local supporters willing to help them. Members of Team Jenson have so far taken part in skydives, the English Half Marathon, the Great Manchester Run, the Chester Half Marathon and the Anglesey 10k to name but a few.
In addition a group of the Team Jenson supporters did the Yorkshire 3 Peaks challenge and have held an awareness walk and fun day and are undertaking a 25 mile sponsored walk, a 125 mile cycling challenge and the Great North Run in September 2018. All of this activity has resulted in over £60,000 being raised to date to help fund research into Duchenne muscular dystrophy. Plans for 2019 include Tough Mudder events and having runners in the London Marathon with more challenges to be set as this Family fund goes from strength to strength.
Jenson is a lovely bright and happy boy who loves swimming and painting but we know how serious his condition is and how it is going to affect him more and more as he gets older. We have been amazed at how many people in the area want to do something to help Jenson and help us to raise funds for research into his condition and we can’t thank them enough for what they are all doing.”
How you can help
- Support them on their JustGiving page
- Follow them on Facebook
- Team Jenson will be splitting the money they raise between the DRBF and Jenson’s future welfare needs. You can also support them at their Go Fund Me page.
Find out more about Jenson’s Fight here.
Muscular Dystrophy UK has been supporting families affected by Duchenne muscular dystrophy since 1959 funding research to find a treatment for this condition. With your help we can continue to fund research which could improve the lives of individuals living with this condition.
Setting up a family fund, like Team Jenson is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.