Twenty-nine-year-old Holly lives with FSH Muscular Dystrophy. She was diagnosed age seven - the youngest in the UK at the time - and wheelchair-bound by age 12. You may know Holly because she worked at Templeton CP School for six years, also up until recently she worked in Bloomfield After School Club in Narberth. In between over the years she has worked at local craft fayres and volunteered at a local foodbank. She is also a regular visitor to Saundersfoot every other day, walking her dog, Dexter.

“At the time of diagnosis, I was a fully able-bodied child,” she says, “the type of child who had no fear. I’d often be climbing the highest tree I could find, looking for the tallest rocks to climb at Glen beach, speeding down my street on roller blades or generally looking for adventure.

“It is a tough condition to live with as I find myself continually deteriorating.”

A good friend of Holly’s, Karen, is a regular visitor to Wiseman’s Bridge with her family. In May 2021 she was elected Mayor of Daventry. As Mayor, she gets to choose a charity for the year, and told Holly that she had chosen MuscularDystrophyUK in her honour. She was determined to make a difference and has organised many charity events including a skydive last October with family and friends which raised £5,000.

Now Karen has signed herself up to do some wing walking, and this time she’s going solo!

Holly commented: “If you knew Karen, you’d know she’s not exactly a thrill seeker. I can’t believe she’s doing it; I don’t think she can either! I just know she’s determined and really wants to raise as much money as she can before her Mayor’s term ends in a few months.

“My family met Karen and her family over 20 years ago. They have since become very important to us. Karen, her husband Mark and their daughters Georgina and Victoria are kind, generous and warm-hearted people and we are very lucky to have met them all those years ago.

I’ll never be able to thank her enough for her efforts and I’m always wishing I could do more. However, one thing I can do is help her with getting the word around to help raise funds.

”Muscular Dystrophy is a genetic condition that gradually causes the muscles to weaken and waste away, leading to an increasing level of disability.MD is a progressive condition, meaning that it gets worse over time. Some types of MD eventually affect the heart or the muscles used for breathing, at which point the condition becomes life-threatening.

Currently there is no cure. However, with the amazing work and dedication of MDUK there is always hope for a breakthrough in treatments. Holly adds: “When I was diagnosed, the professionals didn’t know an awful lot about this disease. All they knew was it’s a genetic condition which causes the muscles to waste away but had no answers as to why and how to stop this happening.

“20 years on, they now know why this happens and potentially what they need to do to stop it. Unfortunately, actually doing this takes time, research, testing and a whole lotta dough!

“I hope and believe one day there will be a cure, or at the very least something to slow the progression. This is why this charity’s work is so important and I’m so grateful to Karen and everyone involved in fundraising. Thank you to everyone who donates and takes part.”

On her Justgiving page, Karen has written: “Holly’s family and ours have been mates for years. We first met her in sunny Turkey in 2004 when she was just 11 years old. A beautiful little blonde lady with Rapunzel hair flowing down her back who in the words of Mark swam like a fish. She had so much charisma and hope for her future - we were floored by her genuineness and outlook on life.

“Holly has refused to let her diagnosis dictate her life and lives as normal a life as possible working with children in her local community. Her attitude is can do not what she can’t. She is such a kind hearted spirit always thinking of others before herself.”

“Please consider donating if you can,” asks Holly. “Da iawn, Karen, for taking to the skies once more whilst helping to fund vital research.”

To support Karen’s fundraising for MDUK and encourage Holly, please visit https://www.justgiving.com/fundraising/karentweedalewingwalk2022