The mum of a three-year-old boy with a rare life-limiting condition has made an impassioned plea for help.

Rachel Devereux, of Scissett, has four children but one of her three-year-old twins, 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.

Hero’s needs will change significantly in the years ahead to the point when he’ll need a wheelchair and the family is also raising money for the charity Muscular Dystrophy UK to try to find a cure for the condition.

More than £1,000 has been raised recently with a self-care and relaxation day and ice bath challenge and three primary school children selling toys along with a raffle and tombola at Holmfirth Civic Hall.

Hero’s 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 adaptations to their home and while the Disabled Facilities Grant will help towards some of the much-needed adaptations, they know they will need much more.

Rachel said: “The help that you imagine will be available for children with additional needs 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 special educational needs and disabilities are not getting services that could be available to them.

“We know we are only at the beginning of our journey with Duchenne Muscular Dystrophy, that the effects this genetic condition will have on Hero will only get more severe as the years go on. We know that right now, our three-year-old is in the prime of his life, where his disabilities are age based or delayed.

“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.”

Rachel added: “Because Hero needs a treatment he needs science to do its job and come up with solutions that will prolong his life and restore his mobility. While we wait for that we must plan for his needs as a disabled child who needs home adaptations, mobility vehicles and motorised wheelchairs.”

Rachel has set up a JustGiving page at https://www.justgiving.com/campaign/herosfight

Nine people will be doing the Great North Run in Newcastle on Sunday, September 10, for the appeal and anyone who wants to organise fundraising events to help Hero and Muscular Dystrophy UK should contact Susanne Driffield by email at Susanne.Driffield@musculardystrophyuk.org.

Parent Sanctuary hosts special walks where families can connect with nature – and each other

Rachel has founded a community interest company called Parent Sanctuary (https://parentsanctuary.co.uk/) in Huddersfield to support the emotional, physical and mental health of families, encouraging parents to connect with the outdoors and nature.

Another mindfulness fundraising day has been organised at Bagden Hall in Scissett for Sunday, October 1 and costs £65 to attend. For details go to https://www.musculardystrophyuk.org/get-involved/events/build-your-resilience-at-the-ultimate-mind-body-power-and-ice-day

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.

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.