Neil and Karen’s eight-year-old son Thomas was diagnosed with Duchenne muscular dystrophy when he was just six months old. They set up Thomas’ Muscle Fund to raise awareness and funds for Muscular Dystrophy UK’s Duchenne Research Breakthrough Fund.
Thomas was diagnosed with Duchenne muscular dystrophy when he was six months old. Following the onset of jaundice after his birth in July 2007, Thomas’s enzyme levels in his liver kept increasing, which prompted doctors to carry out more detailed genetic tests. These tests revealed that Thomas had Duchenne muscular dystrophy, and identified Karen as a carrier of the faulty gene.
While this was devastating news for the family, Neil and Karen are glad they found out about Thomas’s condition at such an early age. They said, “We’ve had longer to mentally prepare for what is to come, and we’ve been able to start undertaking leg stretches for him on a nightly basis. So far, the condition only affects Thomas’s mobility – he has trouble standing up, running, jumping and climbing stairs – he can do all these things, but not as fast or as steadily as his peers.”
Thomas has a manual wheelchair, which he uses when he has ‘tired legs’ , and wears leg splints for about 45 minutes each day in order to stretch his calf muscles. He started steroid treatment in 2013 which is helping Thomas maintain some mobility.
The family have been fundraising for Muscular Dystrophy UK since 2008, and now continue to do so through their family fund. So far they have completed three triathlons, a Zumbathon, a number of supermarket collections, collections at Crewe Alexandra and Nantwich Town Football Clubs, and various concerts.
The family are constantly raising awareness and funds through various activities and, and are always grateful to family, friends and colleagues who are there to support them with their quest to find potential treatments, and ultimately a cure, for Thomas’ Duchenne muscular dystrophy.
Thomas’ mum Karen says: “Thomas is happy, positive, and friendly. He loves trying new things and although he gets tired and often falls, his taste for an adventure never fails.
“We have lots of hope for the future – things have changed quite a lot even since 2008 when Thomas was diagnosed, so with the right treatments, lots of support, and hopefully some positive results from the many research projects currently underway, we hope that Thomas might be able to lead a more ‘normal’ life.”
How you can help:
- support Thomas’ Muscle Fund by making an online donation.
Setting up a family fund like Thomas’ Muscle Fund is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.