Hooray for Hugo! Red-themed fundraiser for rare condition
- Credit: Mantu family
St Albans schoolchildren were seeing red as part of a special fundraising day for a rare genetic condition.
Pupils from Skyswood Primary School in went to town with plenty of red-themed fun to support the national Reds 4 VEDS
campaign and raise funds for Annabelle’s Challenge, the UK's leading charity for vascular Ehlers-Danlos Syndrome (VEDS), a rare life-limiting genetic disorder.
The school was inspired to support the appeal as one of their reception children, five-year-old Hugo Manku, has an official diagnosis of VEDS.
Hugo and his family supported the school in raising awareness of the condition and the School Council came up with a variety of activities to make the day special.
The children conquered a Reds 4 VEDS obstacle course, held a Really Red Raffle and a sold red cakes in their individual class bubbles.
VEDS is a rare condition that affects the veins and internal organs. Around 300 people in the UK have an official diagnosis, although the true figure may well be double this amount.
People with VEDS have thinner collagen and this makes them more vulnerable should they fall or be injured.
The school raised an amazing £1,120, including a generous match-funding for the first £500 raised.
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Head teacher Bob Bridle said: "It was a truly magnificent effort from all of our children and families.
"I’m really proud of all the children, they didn’t let the wind and rain dampen their enthusiasm and we all had great fun whilst raising valuable funds for a very worthy cause.
"Equally important was the opportunity to educate the children and families and raise the profile of VEDS to ensure the best possible support for Hugo as he progresses through the school."
Hugo's mum Kate added: "“As a family we have been blown away by the enthusiasm and effort of all the children, staff and parents at Skyswood in raising awareness of this very rare condition through the Reds 4 VEDS campaign. We are incredibly grateful for their support.
"Hugo and all the children at school had so much fun on the day, have learnt a bit about VEDS in the process and to top it off have raised an incredible amount of money which will go to Annabelle’s Challenge - a small charity working hard to drive research, increase awareness and support people with Vascular Ehlers Danlos Syndrome.”