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Fanatical fundraiser with rare genetic condition repays charity’s kindness


May 29, 2017

A FANATICAL fundraiser proved to be a good egg once again after organising an event to help the charity that supported him with his rare medical condition.

Richmond School and Sixth Form student Marcus Weston is one of only 400 people in the world living with Cardio-Facio-Cutaneous Syndrome, a genetic condition that leaves him with a host of health issues.

Now 12, Marcus, of Richmond, spent the first 13 months of his life in Newcastle’s Royal Victoria Infirmary. His family were able to stay close by because of the work of the Sick Children’s Trust which provided accommodation next door at Crawford House.

To show his appreciation, Marcus enlisted the support of staff and students at Richmond School and Sixth Form College running an Easter egg raffle and bake stall that raised close to £300 for the charity.

His mum Sam, who is also lead learning manager for Key Stage 4, said: “Our learning support staff were wonderful in donating the eggs and packs of sweets and cakes for a big sale. It was a great team effort. Marcus was in charge of raffle tickets with the help of some other Year 7s and we were delighted with the support we got from the whole school in helping us raise £284.”

Marcus’ condition resulted in him suffering severe reflux as a baby and a failure to thrive. He had to undergo bowel surgery, developed sepsis and at 12 months old he only weighed 12lb.

“He couldn’t lift his head or feed himself,” recalled Sam. “The only thing he could do was smile, which he continues to do today.

“It is amazing that he is even here. The random gene mutation is in every cell of his body and he didn’t have solid food until he was seven. We were told he would never walk and the idea he would ever attend a mainstream school was pie in the sky, so we are so proud of what he has achieved.”

Initially Marcus went to a special needs school but he made the transition to a mainstream primary in Year 4.

Sam said: “We felt it was important for him to attend his local secondary school and we have definitely not regretted the decision.”

Teaching assistant Catherine Gleisinger said: “We are an inclusive school and Marcus is a valued member of our community. There has been some lovely support for his fundraising and we are very proud of his efforts to support The Sick Children’s Trust.”

By Emily