Inspired by his daughter and to raise funds for Demelza, Wayne has signed up to take on this year’s London Marathon in a wheelchair – no easy feat for a man who has also had two hips replaced!

“I want to show her anything is possible. She will spend her life in a wheelchair; the least I can do is 26 miles in one”.

Wayne and his wife, Emma from Maidstone, were blindsided when their daughter, Esme, was diagnosed with spinal muscular atrophy (SMA) at the age of 17 months. Emma noticed Esme was missing milestones and appeared to be losing mobility but the COVID-19 pandemic meant diagnosis was delayed. The couple, who also have a son, Archie, five, underwent IVF specifically to rule out a genetic condition on Wayne’s side so Esme’s diagnosis came as a shock to the family.

SMA is a degenerative condition, and it affects children more seriously the younger they develop it; Esme is three years old now and already uses a wheelchair, and it’s unlikely she’ll ever walk on her own.

Inspired by his daughter and to raise funds for Demelza, Wayne has signed up to take on this year’s London Marathon in a wheelchair – no easy feat for a man who has also had two hips replaced!

Wayne says: “Everything about Demelza is amazing, from the staff to the facilities and to the family events the team there put on. Being local, I’ve grown up knowing about Demelza and have fundraised before but they do so much for us now, that I want to be able to give something back and show Esme that anything is possible”.

Esme loves the hydro pool at Demelza. Mum Emma says: “When she’s swimming, she’s weightless; able to move around by herself in a way that otherwise wouldn’t be possible. When she already spends so much of her time in a wheelchair, it’s so valuable to see her enjoying movement like that”.

The family also receive care in their home – visits from Hettie, one of our skilled Healthcare Assistants, that last for a few hours at a time. Esme loves baking cakes with Hettie and the support gives Emma precious time to spend with Archie, Esme’s big brother. Emma says:

“During one of Hettie’s visits, I took Archie out to a soft play centre. I had a moment of clarity where I realised that this was the first one-on-one time I’d had with him since Esme was born. Being able to run around and play with him, instead of watching from the sidelines like I often have to, meant so much to me.”

Wayne’s training is now well underway after he got over the shock of being offered a marathon place. He got the call from Demelza while resting up following his second hip replacement, his crutches by his side - “I’d completely forgotten I’d said I’d do it!”

Wayne may be from a sporting background – he is a boxing coach, teaching boxing and multisport in 50 schools across the South East, as well as in harder to reach communities and with a focus on disability – but is not an elite wheelchair athlete. He will compete in the main race in a standard wheelchair, which has been kindly loaned to him by Gravesend Dynamite Rugby League club.

Wayne says: “I’ve been training since last October and hope to finish the course in 6-7 hours. I will be the first person who has done the marathon in a wheelchair for Demelza and want to hit my target of £10,000.”

With Esme as his inspiration, and his determined attitude – “you’ve just got to adapt to the circumstances you’re in and get on with it!” – Wayne will wheel his way to success and show his little girl that anything is possible.

Find out more about Wayne's fundraising Watch Wayne's interview with KMTV