The mother of a three-year-old boy with a rare blood condition hopes a Christmas Fête this weekend will help fund research into the disorder which has even left medical professionals scratching their heads.
Rylan Feery was diagnosed with hereditary spherocytosis when he was a day old, leaving him jaundiced, anaemic, and with a weak immune system which is very susceptible to picking up illnesses.
Mum Kayleigh Storey (29) from Hampton said: “Certain infections are quite dangerous to him such as Chickenpox and Slapped cheek syndrome.
“It’s worrying because he will become quite lethargic and not want to eat and we have to rush to hospital.
“When he’s really anaemic he needs a blood transfusion.
“He’s generally okay on good days but when he’s anaemic and run down he can’t go to school.”
Kayleigh takes Rylan to the Haematology Unit at Addenbrooke’s Hospital in Cambridge every three months for check-ups and she wants to raise money at a Christmas Fête on Sunday (December 13) for its research centre.
“They’ve been amazing with their support,” she said.
The event runs from 11am to 4pm and will include a tombola, raffle, lucky dip, lots of different stalls and games and a wishing tree.
And it is likely to be just the first event of many with Kayleigh even hoping to go on a sponsored mountain climb in the future.
Rylan will need his spleen removed when he is five because it has become enlarged from his condition.
This will make him less lethargic but he will need to continually take antibiotics which will leave him more likely to be affected by infection.
But Kayleigh hopes that people’s generosity will help to publicise and treat hereditary spherocytosis in the future.
She added: “A lot of medical professionals have not heard of it. We want to raise money for research and awareness.”