Nia’s marathon for young boy with rare genetic condition

10th September 2021

A WELSH Ambulance Service worker who “hates running” is taking on this year’s virtual London Marathon.

Nia Hughes, 42, from St Asaph, Denbighshire, will be taking the challenge in October in honour of her friend’s nephew Jack Binns, six, who has a life- limiting genetic condition that could see him need a wheelchair from age eight.

The Binns family – mum Jill who runs a balloon business, dad Rich who works in construction, sister Olivia, nine, and Jack – live together near Chester having recently moved to a bungalow to help accommodate Jack’s increasing needs.

Rich said: “In November of 2019, Jack at age four was diagnosed with Duchenne Muscular Dystrophy (DMD).

“This is a very rare terminal muscle wasting disease which mainly affects boys and currently has no cure.

“It can have a life expectancy of between 20-30 years due to heart and breathing problems as they gets older.

“It could see Jack needing a wheelchair from the age of eight.  

“Through the charity Duchenne UK, we have set up a family fund called Backing Jack which is raising money for research and development into the disease.

“Several clinical trials are already underway in the UK for the treatment of DMD, including Gene Therapy and Exon skipping.” 

Nia, who works in the Trust’s Resilience team, and who usually keeps fit with CrossFit sessions, said: “I hate running, I’ve never liked running.

“But when lockdown came along, I thought ‘what am I going to do?’.

“So I took up running again with my friend Ruth Stiles, just a couple of five or 10k’s a week to keep ticking over.

“One day I said to her, ‘should we do a marathon?’.

“She said okay, but we’d really have to train for it.”

The pair had reached a point where they were actually starting to enjoy running and wanted to do it for a cause that would help somebody they know and care about.

Nia said: “Jack is the nephew of a friend and former colleague, Emma Binns, whom I worked closely with for several years and got to learn about Jack’s condition.

“Our race numbers and new trainers have arrived and we’ve been training hard and increasing our distance on trails around Denbighshire.

“We hope many people will be able to dig deep and help fund research into Duchenne and support families across Britain who face life with it.”

Speaking of how DMD affects their family, Rich said: “It affects Jack hugely in terms of his physical ability.

“He cannot run properly, he falls frequently due to the weakness in his legs and tires easily.

“He has a large buggy which we take everywhere for him to get in when he tires.

“He struggles with other daily routine things like stairs or going to the toilet, but he is the most determined and happy little boy we know.

“He and his sister Olivia are very close, and she understands him as well as we do as parents and is constantly assisting him or playing together.

“We are so grateful to Nia and Ruth for taking on the marathon and raising much needed awareness for DMD.

“Thank you so much and good luck from all our family.”

Nia and Ruth will track their marathon challenge on the official Virgin Money Virtual London Marathon App.

They are plotting a course that will take them through St Asaph, Rhuddlan, Dyserth and the wider Denbighishire area.

You can sponsor Nia and Ruth to help Backing Jack and Duchenne UK find a cure for this cruel condition by clicking here to visit their official Virgin Money Giving page.

You can also keep up-to-date with Backing Jack on Facebook here.

Editor’s Note
There are an estimated 300,000 sufferers of DMD worldwide 
Duchenne UK (Registered Charity Number 1147094)

For more information, email Communications Officer Joel Garner at Joel.Garner@wales.nhs.uk