I first found out I was a carrier for Becker muscular dystrophy after asking my dad “if I was to have a kid when I’m older, would they have muscular dystrophy too?” After school, we went to the beach at Irvine to get ice cream. He told me that I was a carrier and that there was a 50/50 chance my son would have Becker muscular dystrophy and a 50/50 chance my daughter would be a carrier. We had a little cry as we spoke about it, but it brought us closer together and the ice cream was delicious.
I’m passionate about raising money and awareness for MDUK as I think a lot of people don’t know what it is. My dad is probably the best dad in the world and I want to help as much as I can to find new treatments and a cure, and help all the other people who also have muscular dystrophy.
So, when my school wanted us to suggest worthwhile charities to raise money for, I knew I wanted to raise money for MDUK. My classmates know that it is really important to me and so they all came together and were really supportive. I was so excited about being able to raise money to help find a cure for muscular dystrophy and being able to do it while having fun with my best friends.
We organised an event where we cycled or scooted around the school track, doing 1000 laps! Mums and dads and anyone else who could help us donated money through the school. On the day, three classes across my school took part, with about 60 students getting involved. We raised an amazing total of £1625, with a massive £1230 being contributed through fundraising I did with one friend’s help in particular, Rhys.
Before organising the fundraiser, my dad and I didn’t know that my schoolmate, Rhys, also had a connection to muscular dystrophy. Rhys’ second cousins live with facioscapulohumeral muscular dystrophy (FSHD) and so he was also really excited to get involved with making a difference through our event. With her family connection to the condition, Rhys’ mum, Linda, was personally very keen to get involved and help in the fundraising. We had so much fun on the day and took loads of pictures with our friends to celebrate. It is especially great to meet other families who have some understanding of the conditions as we can share our experience and work together.
I hope the money we have raised together helps fund research into treatment and a cure for muscular dystrophy and makes the lives of all those with it better.
Winter’s dad, Joe who publishes a regular blog Dystrophy Dad in which he explores living with BMD, said, “As with all she does I'm incredibly proud. Since learning she is a carrier, Winter has arrived to support our community and make sure to teach others about muscular dystrophy.”