Jenson Edwards, who will be five years old in October 2017, 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 have taken part in a variety of fundraising events including the Great Manchester Run, held an auction night in October 2016 and run in the Manchester Half Marathon. Future plans include a team of sixteen participants in the Make Today Count skydives on 5 March 2017 followed by an even larger team of runners taking part in the Chester Half Marathon in May 2017. In addition Jenson’s dad Craig is working on an idea to try and arrange a team to get sponsored to pull an Airbus transporter aircraft along the runway of a local airfield.
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
- Jenson’s Fight 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 Jenson’s Fight is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.