Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome
Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome. His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening.
The event takes place today in Vichy, central France.
Speaking before they travelled, Kim, 43, said: “I’m really nervous. They are forecasting 32 degrees and it will be hard to acclimatise to that temperature.”
The pair, who have always been keen runners, have competed in marathons and half-ironman triathlons before but decided they needed to go further.
They competed in a half-ironman last year, which was also to help raise funds and awareness for Ehlers-Danlos Support UK.
They chose the charity because of a neighbour’s son, Hugo Whatton, who has the condition.
(EDS) weakens the skin tissue, causing abnormal bleeding and bruising.
Hugo has the rarest form of the syndrome – vascular – which affects just one in 250,000.
His mother, Victoria, explained that a simple fall could cause seriously bleeding and lead to aneurysms. And with Hugo now a typical three-year-old, those falls are getting more frequent.
Victoria said: “The number of falls he is having is getting worse. The bigger he gets, the bigger the falls.
“He has just started at nursery but we’re lucky that they are so good.
“He has one-to-one help and they are fully aware of his condition. He has to have someone holding his hand in case he should trip.
“He did fall onto his knee recently and lacerated it quite bad. I think that was a shock to them to see how vulnerable he is.”
For Victoria raising awareness and funds is vital.
She said: “When we go to hospital, no-one understands. No-one grasps what is going on.
“There’s not enough research. There’s no cure but we could change his lifestyle.”
And that is why she is so appreciative of Kim and Alasdair’s efforts.
“They are truly, inspirational people,” she said. “I’m totally in awe of them. I couldn’t do it.”
Kim and Alasdair raised almost £2,500 last year and Kim hopes to get close to that again.
She said: “It would be great if we could but it would also be lovely to get to £2,000.”
To donate, visit www.justgiving.com/kim-hutt2
This brave three year old is getting some special attention which he rightly deserves.
We appreciate your Facebook shares, likes and comments