A school in St Albans dressed in red in support for one pupil who has a rare genetic disorder last month.
St Columba’s College joined the Reds4Veds day, a global campaign to raise awareness of Vascular Ehlers-Danlos syndrome which seven-year-old student, Hugo Whatton has.
The Prep 2 class also held a bake sale which raised £450 for Annabelle’s Challenge, a charity which supports patients and families affected by the illness.
Vascular Ehlers-Danlos syndrome is the rarest form of EDS and is often considered the most serious. VEDS is a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile.
Hugo’s mum, Victoria said it was a very emotional day seeing everyone support him.
Victoria said: “It was fantastic, very emotional and over whelming. To do that for my son, a thank you isn’t enough.”
Victoria opened up about the impact his illness has had on the family.
She said: “It affects anything in his body that uses collagen. So we have to be aware about everything he does because falling on something could potentially rupture something internally.
“He was diagnosed at two so before that he was bruising badly and he didn’t have the strength because it affects his muscles. Ever since we found out, we have researched and found more children with the same condition.
“We never know what is round the corner – it is never ending. I feel terrible because he is a young boy and I feel like I am holding him back but I have to. We have to think everything through twice because the little things multiply in his case.”
One of Hugo’s serious injuries happened from a simple fall onto concrete which caused a deep cut from his skin all the way down to his knee joint.
Hugo, who now has to wear knee pads to prevent similar injuries, has to go to the hospital every two to three weeks which doesn’t faze him said Victoria.
“Despite his illness, he is such a happy boy and just takes it in his stride. He gives me hope and strength to carry on. He is inspirational,” she said.
With no cure for VEDS, Victoria is a big campaigner for Annabelle’s Challenge who are supporting and funding major research to help children like Hugo.
For more information about Annabelle’s Challenge, visit annabelleschallenge.org
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