Family and family of Buckley five-year-old boy with muscle-wasting condition ready for 'most challenging year to date'

Reporter:

Beth Hughes

The friends and family of a little boy suffering from a muscle-wasting condition are raring to go for their “hardest, busiest, most challenging year to date.”

Jenson Edwards, of Buckley, was diagnosed at the age of three with Duchenne Muscular Dystrophy (DMD), which causes progressive muscle weakening and premature death.

His parents Craig Edwards and Hannah Grindley, from Buckley, formed ‘Team Jenson’ after their son’s diagnosis.

The team is a group of loved ones, and even strangers who are undertaking various challenges to raise funds for the charity MD UK and to help find a cure for the youngster.

In the past two years, ‘Team Jenson’ has gained momentum and they have now raced past their original target of £3,000 to a total of nearly £6,500.

For dad Craig, 2018 has a lot more in store for the fundraising squad, including Anglesey Half-Marathon and 10k in March, the London Marathon in April, and the Yorkshire Three Peaks in July.

He said: “My main goal is always the same – to spread awareness of Duchenne MD and fundraise as much as we possibly can.

“Our main targets differ between myself and Hannah. Hers this year is the London Marathon and the national Three Peaks. Mine is to try and do a half-marathon every month.

“The half-marathon I really want to do is Newcastle. I also want to do the national Three Peaks. I thought about doing that this year but thought it best I do something a little smaller first in Yorkshire.”

For Craig, this year’s mission is to not only to raise awareness of MD but to inspire others on the team.

He said: “Not many people have heard of Duchenne or Muscular Dystrophy itself. There are lots of different types of MD. It was totally a shock to myself and Hannah to find out there was such an awful and brutal illness so we set about fundraising.

“My first half-marathon was in Manchester in 2016 and there was a huge group of people wearing red and white for the British Heart Foundation. I just remember saying to myself, I want that!

“Everybody’s heard of the Heart Foundation and that’s why they had so many people. I want the same for Muscular Dystrophy.

“The main thing for us is just to see our team at the starting line each time. We have gone from having three people run a 10k to 50, all wearing orange. The awareness that alone brings is amazing.

“The team is very important because there is only so much we can raise. The team members know other people that we don’t, so we ask all new members to do at least one fundraiser and then try and get someone else on board next time.”

Sixteen supporters will be doing a sky-dive in March in aid of Team Jenson, and Craig is currently organising a sponsored go-karting event as a fast-track to raising funds.

For Craig and Hannah, ensuring their son has the best chance of beating his condition is the focus.

Craig added: “Jenson himself will be cheering us and the team on at every opportunity. He knows his mum and dad run and loves to come and watch us.

“He has started asking questions like, ‘why is everyone wearing orange and white?’ He knows it’s something to do with him, and we have just told him they are all trying to help fix his poorly muscles.

“The heartbreaking thing for myself and Hannah is he keeps asking if it will cure his poorly muscles. We just have to keep saying ‘we hope so.’”

To support Team Jenson on their next fundraiser, visit www.justgiving. com/teams/TeamJenson.

Email:

beth.hughes@nwn.co.uk

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