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North Yorkshire boy with rare condition inspires new lifeline
A BOY who has battled the symptoms of a rare genetic condition has inspired a fundraising drive to support a lifeline for families with sick children.
Marcus Weston, eight, is one of around 200 people in the world and 20 in the UK with cardio-facio-cutaneous (CFC) syndrome, a condition which affects the heart, face and skin and many with CFC have learning difficulties.
Marcus, who has spent months receiving treatment at the Friarage Hospital, in Northallerton, and the Royal Victoria Infirmary (RVI), in Newcastle, has confounded doctors’ dire predictions by attending a mainstream school and participating in a wide range of activities.
Consultants said they feared Marcus would die while an infant, and although there is no cure to treat all of the symptoms of CFC, his family and friends have been astonished by his courage, sense of humour and determination to progress.
She said: “It has been a really long, hard journey. We were told by doctors that he would fade away by the time he a was a year old and it’s only in the last year that he has started eating solid food.
“At school he gets the social interaction and positive role models he needs and when he comes along to Saint Francis Xavier School, in Richmond, where I teach English he is treated like a mini-celebrity and dances with the pupils.”
Pupils and staff at the secondary school decided to herald Marcus’s achievements by raising money for The Sick Children’s Trust, a charity that runs Crawford House, which offers accommodation and support to families with sick children receiving treatment at the RVI.
Youngsters sponsored David Mann, the school’s head of music, and a team of bike riders on a two-day coast-to-coast cycle, which has seen the charity’s coffers boosted by £1,300.
Mrs Weston said: “Crawford House was a roof over our heads as Marcus was regularly at the RVI until he was 18-months-old and we have a lot to thank them for as it enabled us to keep our family together.”