For the Love of Thomas

Our gorgeous 14 year old boy Thomas is slowly dying. He is suffering from the most common and most severe type of Muscular Dystrophy – ‘Duchenne’.

Duchenne Muscular Dystrophy is a muscle wasting disease, where muscle tissue is progressively replaced by fatty or connective tissue. It normally only affects boys.

Doctors expect sufferers like him to be using a wheelchair between the ages of 8 and 11, and it becomes life threatening at 18. Many sufferers don’t reach their late 20’s, as ‘DMD’ as its known, affects every muscle in the body, including the heart.

The worst thing is, there is no cure. The benefit of existing treatments are extended mobility (we’ve been told up to 3 years) but any treatments available have severe side-effects, such as brittle bones, weight gain and stunted growth.

This is why we need to raise money – there is still time for scientists to find a cure for DMD and research is on-going, but it could take years for them to find a cure and then it needs to pass the tests to release it to the public, so the sooner we raise vital funds, the better.

Thank you for your support – it means the world to us x

Pedal Paddle Peak 2022!

On Saturday 2nd July, The Tilston Trotters (Doug, Kate, Jo, Mary, Simon and Tony), a group of brave runners from Tilston and Malpas, will be tackling the Pedal Paddle Peak 2022. The event is a charity challenge, which they are taking part in on behalf of Thomas’ Muscle Fund, in aid of Muscular Dystrophy UK.
The team will be taking on a 30 mile cycle ride, a 2 mile canoe paddle across Ullswater Lake and then a tough climb up to the peak of Helvellyn, England’s second highest mountain!
We met up with the team last month – they are such a fantastic group of selfless people who are willing to give up their spare time to help fundraise.
You can sponsor Doug and the team here:
Read more about the Pedal, Paddle, Peak Challenge here:
You can also read a recent press release about the team and the event here:
We are so very grateful for their support! ❤️

Another Day at Alder Hey…

Thomas is spending today at Alder Hey- he’s pleased to be missing a school biology test, but is having plenty of tests here- plus a bone infusion, which he’s not looking forward to (in particular the after effects!)