Daniel from Llanelli was born in March 2009. In May of that year, his parents discovered he had Duchenne muscular dystrophy.
Defenders of Dan
As you can imagine, the news was devastating. Being new parents, the news hit my husband David and our families very hard. However, we have much to be thankful for. We take one day at a time, keep a positive outlook and we do our very best to support Daniel in whatever lies ahead.
Thankfully we have the best family, friends and support network that we could ask for and there are many families out there in a similar situation to us. We hope as a community to tackle this head on and make positive progress into finding a treatment.
We are so proud of Daniel. He sat his GCSEs in 2024 and now goes to college three days a week, where he has an adaptable workstation to do his work. He’s hoping to stay on at college and study a business course. Daniel enjoys a day out with his support worker each week, whether that’s a trip to the cinema or another activity he fancies. We also feel incredibly lucky that Daniel was the first boy in Wales to be given the medication Givinostat as a support treatment for Duchenne!
Net proceeds from Defenders for Dan will be split with 80% of the funds will go towards research, and the remaining 20% for Dan’s future care needs.
