Couple to trek 177 miles in aid of Potters Bar boy
PUBLISHED: 07:00 16 June 2018
supplied by Virginia and Jason Brimson
A Potters Bar couple are setting off today (June 16) on a 177-mile trek to fundraise for the charity that aids their young nephew's rare genetic condition.
Jason and Virginia Brimson plan to walk the length of Offa’s Dyke on the English-Welsh border to raise money for Annabelle’s Challenge, a charity that supports those affected by vascular Ehlers-Danlos syndrome (vEDS).
Their inspiration is their nephew, six-year-old Hugo Whatton, who was diagnosed with vEDS at the age of two.
While Ehlers-Danlos syndrome (EDS) weakens connective tissue, causing abnormal bleeding and bruising, vEDS presents even more of a risk, with the possibility of arterial or organ rupture at any time.
Jason and Virginia said: “No one knows what is around the corner for people affected by this syndrome.”
Hugo’s mother, Victoria Whatton from Potters Bar, told the WHT: “It’s like a ticking time bomb.”
As well as raising money for Annabelle’s Challenge, Hugo’s family are desperate to raise awareness of the condition, as it is severely undiagnosed.
Hugo was diagnosed at the age of two, but in many cases people are diagnosed only after a severe rupture.
“The only thing we can do is make people more aware,” said Victoria.
Victoria urges parents to research in case their child, unbeknownst to them, has the condition.
Hugo had a hospital visit recently after he tripped over on a badly tarmacked road, and now his leg is in a cast.
“Every time something like this happens, it brings home how fragile he is,” said Victoria.
Hugo is exceptionally brave, however. and sees his trips to the hospital as a chance to have fun with his beloved colouring books.
Thanks to his school being so good at keeping him safe, he “does pretty much everything that other boys can do,” said Victoria.
Jason and Virginia’s fundraising efforts have attracted support from Jason’s company UPS.
The onerous two-week challenge is looming, with a fundraising target of £2,500.
They are covering all costs of the trek themselves, so that every penny of the funds raised can go to Annabelle’s Challenge.
To donate to the trek, visit https://www.justgiving.com/fundraising/jasonandgindooffasdyke
You can also donate by texting “OFFA90 [£amount]” to 70070.
To know more about vEDS, see: www.annabelleschallenge.org/vascular-eds/