Duchenne Muscular Dystrophy Fundraising

Over £1000 raised for Duchenne Muscular Dystrophy (DMD) in Ice Bath Challenge and a half-term fundraising day!

A day of selfcare, relaxation and chilling out, in a nice ice bath, was just one of the ways people have donated to help Hero and MDUK find a cure for DMD.

A day of movement, mindfulness, and meditation, learning ways to overcome challenges and make life more enjoyable.

The breathwork and full on Fitness4x4® session provided by The Resilient Lifestyle coach Graham, gave everyone a taste of their physical strength. And then to prove the mindset techniques work they accepted the challenge to climb into an ice-bath. After 2 minutes the intense feelings and shock of the cold began to fade and feel relaxing with everyone staying in the water for at least 10 minutes! Well Done!

The day was such a success that we will be going on to host another in October – sign up here.

3 primary aged children also helped raise money by selling much loved toys, hosting a tombola and a raffle at Holmfirth Civic Hall, helped, of course, by their parents, making the total raised so far surpass £1000! Thank you!

Hero, a little boy from Huddersfield with Duchenne Muscular Dystrophy (DMD) has had such a great little life so far, learning about the world with his twin Apollo and mum Rachel as they head off into the natural beauty spots of Kirklees with their work at Parent Sanctuary (www.parentsanctuary.co.uk). Rough and tumble at home with older sister and brother Artemis and Thor always provokes giggles and excitement. But now, as they are three, it is time for them to have their own “work” and
give mum a break, by heading off to preschool, where excellent childcare specialists can help further their education and help them grow and develop their own interests.

Running a business (Parent Sanctuary) with babies was hard, but with toddlers and a disability it really did begin to get tough, much like running a marathon (https://www.musculardystrophyuk.org/get-involved/events/great-north-run-2023)
– those last few miles the hardest.

And sadly, the help that you imagine will be available for children with additional needs (and professionals thought they were referring to) just isn’t there – support services are dependent on whether funding has been allocated, and even then, low wage jobs and volunteers make up much of the face-to-face support, waiting lists are long, and practical help seems non-existent.

This is not to discredit the good work they do, but to highlight that all kids with SEND are not getting services that could be available to them.

Rachel mother of Hero said “We know that we are only at the beginning of our journey with DMD, that the effects this genetic condition will have on him only getting more severe as the years go on. We know that right now, our 3-year-old is in the prime of his life, where his disabilities are age based or delayed.

“3-year-olds fall, 3-year-olds don’t have a full vocabulary, and 3-year-olds don’t get to make many decisions in life. But as he grows, he will face discrimination, separation from peers, and a life so unimaginable for an able-bodied person. DMD is a cruel disease that slowly strips your independence in what should be the prime of your life.

“Can you imagine playing laser tag in a motorised wheelchair? No, I can’t either! But I can imagine a little boy sat listening to his friends chatting about the epic game of laser tag they had last weekend, the one they knew Hero wouldn’t be able to go to, so they didn’t invite him”.

This is why we have a family fund; this is why we are raising money for research into DMD. https://www.justgiving.com/campaign/herosfight

Because Hero needs a treatment, Hero needs science to do its job and come up with solutions that will prolong his life and restore his mobility. And whilst we wait for that, we must plan for his needs as a disabled child, who needs home adaptions, and changing spaces at school, and mobility vehicles and motorised wheelchairs and accessible sports and activities like Leeds Powerchair Football (https://www.leedspowerchairfc.co.uk/).

Hero needs your support! He needs his armour, and each person who donates becomes a link in his chainmail, they are helping to protect him from what’s to come, hoping to deflect the arrows and make him strong.

We have a number of upcoming events, or you can create your own to help raise funds. Our fundraising specialist Susanne can help you form your own. (Susanne.Driffield@musculardystrophyuk.org)

Maybe a coffee morning or a bake sale – like Holmfirth Civic Hall did.

Challenge yourself to a run, like the Great North Run – where 9 people are currently signed up to race and 1 masseuse has pledged to work the finish line for MDUK. Sponsor one or sponsor them all via Hero’s Fight Against DMD, or sign up and help (link to MDUK or Susanne)

  1. Charlotte (Hudds)
  2. Adam (North East)
  3. Elizabeth (Bradford/Hudds)
  4. Laura (Hudds)
  5. Dean (Hudds)
  6. Sippy (Hudds)
  7. Nicola (Leeds)
  8. Lucy (Hudds)
  9. Rob (Otley)
    Rachel of Regain Pain Management will be helping ease any post-race
    aches with massages for racers.

And don’t forget to book to come build your resilience at the “Ultimate Mind Body Power and Ice day at Bagden Hall on 1st October.