12-year-old challenges ‘doom and gloom’ muscular dystrophy diagnosis with Superhero sports events hosted by Paralympian
A 12-year-old boy who was told he might never be able to walk after a muscular dystrophy diagnosis on his first birthday is now a budding athlete who climbs mountains, takes on triathlons and loves a game of ping pong.
Jenson Whitehouse, the youngest of four children of Chantal and Garry Whitehouse, was diagnosed on his first birthday with Duchenne muscular dystrophy – “a progressive, life-limiting, muscle-wasting condition” for which “there’s no cure” – and also has a rare chromosome condition and autism.
“When he was born, everything seemed absolutely fine, but over the first year, we noticed he was delayed with his milestones,” his mum Chantal told PA Real Life.
“We got told: ‘Oh, don’t worry. Children do it all differently’. But I just had an inkling, because of the other three children, that something wasn’t quite right.”
He’s now an active little boy who loves the outdoors and getting stuck in to physical activity, a passion uncovered by his involvement in the Superhero Series – a series of athletics events designed for and by people with disabilities, which includes large-scale summer and Christmas events as well as at-home activities.
“We’ve climbed Pen y Fan in Wales, we pushed him up in a wheelchair. We’ve done archery with him, paddle-boarding, hatchet throwing, alpaca walks… He’s always up to his antics. He loves being out in the great outdoors,” Chantal said.
Jenson started walking just before his second birthday, although he’s not as quick as his peers, he can’t jump or hop, and he also has some learning difficulties. He can’t read or write, but he has “an amazing memory”, according to his mum.
“He’s like an encyclopaedia, the way he goes on about a lot of topics we’re not aware of!” Chantal said.
Jenson’s love for the great outdoors and active pursuits was inspired by his involvement in the Superhero Tri, powered by Marvel, which was founded in 2016 by Paralympian Sophia Warner, a track and field athlete with cerebral palsy who took part in the 2012 Summer Paralympics in London.
His first event was the 2021 Winter Wonderwheels event when he was 8, and Chantal said the family aims to attend the winter events each year as they coincide with Jenson’s diagnosis date.
“Superhero Tri is my Paralympic legacy,” founder Sophia Warner, 51, told PA Real Life.
“London 2012 inspired so many people with disabilities to try sport but there was no mass-participation, grassroots event that put them and their needs front and centre. I wanted Superhero Tri to be not just ‘inclusive’: it had to be exclusively for people with disabilities by removing all the barriers to participation that typically come with other events.”
The main summer event is the Superhero Tri, hosted this year in Windsor, which offers three triathlon events: the Sprint, which involves a 150m swim, a 3km bike ride, and a 1km run or push; the Half, with a 400m swim, 10km bike ride and 2.5km push/run; and the Full, which is a 750m swim, a 20km cycle, and a 5km push/run.
On August 16, which happens to be Chantal and Garry’s 28th wedding anniversary, Jenson and his family – his parents, family friend Graham and Benji the dog – will take on the Sprint Superhero Tri. Jenson will be joined by Paralympic, World and European table tennis champion Will Bayley for the track run.
“It’s good for his confidence,” Chantal said of the event.
“He’s just buzzing… He’s so chuffed to bits afterwards, because he loves telling everybody all about his adventures and what he’s done. After one event, he’s like, when can we do the next one?”
Chantal says that, hopefully, he’ll be up to walking the 1km, but if he isn’t able to on the day then he’ll use a specialised wheelchair, since the event enables participants to use any kit and gadgets they’d like to complete the course.
“Our Everyday Superheroes call the shots and can take as long as they wish using whatever adaptive super kit, gadgets and gizmos they need to get them round the course,” Sophia Warner explained.
As the name suggests, the Superhero Series encourages participants to dress up as their favourite heroes – while also celebrating the heroic feats they themselves are completing. Over the years, Jenson’s superhero outfits have ranged from Batman to Ironman and Hulk, and this year he’ll be going as Captain America, since, as Chantal says, he’s “a huge star”.
He’ll also be wearing the special Golden Cape, which will be presented to him by sports journalist and broadcaster Clare Balding, as one of the event’s seven Everyday Superheroes, an award bestowed to him for his ever-present smile and his remarkable spirit.
“It’s absolutely incredible to have the backing of all these different Paralympians and presenters, because I know everything in society with disabilities, it can sometimes always be dampened down,” Chantal said.
“We were really sceptical when we were in that consultation room with his diagnosis, we thought: ‘Oh, he’s not going to be able to do anything’. To see how it is down the line – it gives so many families hope.
“We just wish we found out about the Superhero Series a lot sooner, because it’s just so uplifting for the whole family. And it’s a great talking point to help other families see that there is hope.
“There’s so much more than just a diagnosis, and it’s just about making the most of every single moment you have.”
This year’s Superhero Tri, powered by Marvel, takes place at Dorney Lake in Windsor on Saturday August 16.