Her son Tommy, 13, was newly diagnosed with LGMD when she met Martin Hywood, 44, and the three are now firm friends.
Hayley said: “I met Martin a few years ago at an MDUK conference and we’ve stayed in touch ever since. I had only just received Tommy’s diagnosis and had spent most of the day in tears. Martin was an ambassador for the charity, and he chatted to me about Tommy’s condition when he noticed how upset I was. He was understanding and positive, and we’ve stayed friends ever since.
It’s great to have someone to go to. If I’m having a bad day, I know that I can just give him a call.
"He and his family are always there to support us. We’ve done Move a Mile for Muscles with him, and Tommy wore a superhero outfit on the day.
He does so much fundraising, it’s incredible. He told me once that Tommy is one of the reasons he won’t give up. He said: ”I just think of Tommy in his superhero outfit and I know I have to carry on. Maybe I can help find treatments or a cure for him with all my fundraising.”
I know he doesn’t like the word inspirational, but he definitely is! I always use him as a role model when I’m talking to Tommy about things. He’s a really good person to demonstrate what can be achieved by someone with LGMD. I can point out all of the things that Martin does, and tell Tommy that we just have to do some things differently and never give up.”