A fundraising day has been organised to help the family of a three-year-old boy diagnosed with a life-shortening medical condition and to try to find a cure for it.
His mum, Rachel Devereux, founded her community interest company Parent Sanctuary in Huddersfield to support the emotional, physical and mental health of families, encouraging parents to connect with the outdoors and nature.
Rachel, of Scissett, has four children, including three-year-old twins, and one of them, Hero, has been diagnosed with Duchenne Muscular Dystrophy (DMD).
It’s a terrible, ultimately terminal disease and there’s no cure. It affects one in 3,500 to 5,000 male births and, on average, boys will die in their 20s. It’s caused by a lack of dystrophin that helps muscles grow and develop normally.
Rachel said: “Currently the impact the condition has is minimal on Hero but this will change over the next few years. Hero now has delayed speech, a waddling gait and falls frequently. There are other challenges because of his fatigue and his distress at not being able to keep up with his twin but, on the whole, he is a happy, normal three-year-old.
“But this will change. Before he has finished high school he will be in a wheelchair full-time.”
The family is aware the diagnosis will bring great physical, mental and financial challenges but Rachel is determined to make Hero’s life and living with his condition positive for him, for the family and for other boys and families living with the massive impact caused by Duchenne Muscular Dystrophy.
They want to raise awareness and money to help find a cure for DMD, to help find a medicine that will allow bodies to generate dystrophin and to help find ways to help boys with DMD live longer.
Rachel is also acutely aware they will need modifications and adaptions to their home and while the Disabled Facilities Grant will help towards some of the much-needed adaptions, they know they will need much more.
To raise money, a fundraising day has been organised for this Bank Holiday Monday (May 1) at Bagden Hall in Scissett.
Rachel will teach her nature-based mindset and fitness techniques including meditation. She has teamed up with Graham Wheatcroft, founder of the Elland-based Resilient Lifestyle company to teach his Fitness4x4 programme – a unique combination of yoga, pilates, aerobics and resistance training to give participants a full body work out, strengthening the core, improving flexibility and increasing cardiovascular endurance.
At the end of the day, anyone who fancies it can take the ice bath challenge.
To book to go on the event which costs from £65, including lunch, go to https://www.eventbrite.co.uk/e/mindset-motivation-overcoming-challenges-tickets-596196689347
If you can’t make this day, inquire about sky dives and other fundraising challenges by emailing Rachel at Rachel@Parentsantuary.co.uk and type HERO in the subject box.
A Family Fund has been set up to help Hero through Muscular Dystrophy UK which will take 80% of any donations to find a cure for DMD and save 20% for the family for future needs. You can access it HERE.
- Written by ANDY HIRST who runs his own Yorkshire freelance journalism agency AH! PR (https://ah-pr.com/) specialising in press releases, blogging, website content and copywriting.