THE parents of a courageous little boy who had surgeons cut away pieces of his skull and put it back together are fighting to raise awareness of his rare condition.
Harvey Brown, 11, suffers with Craniosynostosis, a rare condition that left his skull fused together - restricting the growth of his brain leaving him at risk of permanent brain damage, blindness and deafness. But four years after having his second operation Harvey’s mum Gill, of Horse Park Lane, Pilling, says he’s doing well and they want to hold more fund-raising events for Craniosynostosis.
Harvey has been so brave, he is a real character, has never ever moaned about all the trips to Alder Hey - he just gets on with itMum
She said: “Harvey’s doing really well but we still want to do more things to raise awareness. In the last few years we’ve done a ladies’ day which raised £3,500 and a party where people brought donations instead of presents and that ended up raising around £3,000.
“We’re open to any ideas as we’d really like to do more events and I had thought of organising a summer ball next year but nothing is sorted yet.”
Harvey had to go through 10 hours of life-saving surgery as well as CT and MRI scans since his first major operation in 2008 aged just two and ahalf.
Using a new state-of-the-art scanner that guides them away from major blood vessels, surgeons from Alder Hey Children’s Hospital in Liverpool cut open his skull from ear to ear and removed the back part of the skull to be re-modelled and replaced.
Gill, 45, said Harvey is a “real inspiration” after adjusting back to normal life with his dad Jim and 15-year-old brother Sam.
She said: “Harvey has been so brave, he is a real character, has never ever moaned about all the trips to Alder Hey - he just gets on with it. He is a real inspiration to all who meet him, a real happy chappy. He has been through so much, bad headaches, name calling, but he never complains.”
Harvey still has to go for check-ups twice a year but the football-mad youngster is now back to doing what he loves. The Manchester City supporter is fighting fit and back on the pitch himself, re-joining his team mates at Cockerham Juniors.