THE family of a teenager for whom a common cold could be deadly are hoping to add to the amazing £60,000 they have raised so far for research into his rare condition.
Connor Wright, from Crowland, suffers from Shwachman Diamond Syndrome, which means his bone marrow does not produce enough healthy infection fighting white blood cells.
That means he has a very low immune system and can become very ill if he is exposed to common illnesses.
His grandmother Sue Kilby has organised a charity ball for the past six years, which has brought in the grand total, and are hoping the seventh annual event on Friday, November 16, will take their total even higher.
The money they have raised is absolutely vital as Connor’s condition is so rare, there are very few donations to fund research at Great Ormond Street Hospital, London, where the youngster is treated.
Because of the rarity of the disease, Connor was nine before he was diagnosed, but now, thanks to the research and awareness raising, children are more likely to be diagnosed much earlier, enabling them to receive treatment and take measures to protect themselves from common illnesses.
Mrs Kilby said: “If what we do helps just one child to be diagnosed earlier, it is so worthwhile because it means parents can take certain steps to prevent them coming into contact with common bugs and start getting the help they need.”
Connor has been home schooled since he was diagnosed and is currently studying for GCSEs.
Sue said: “He’s just had his latest blood test and the results were quite bad. His blood counts are critical at the moment, but he is growing well and he’s not too bad.
“But we still have to be careful all the time, especially with all the winter bugs. We can never be complacent.
“At the first sign of a cold we are all on tenterhooks, although the research is finding out more about the condition all the time.
“Connor is a strong lad and just takes everything in his stride, despite the 40 or 50 pills he has to take every day.”
Tickets for the fundraising ball, which will be at Holiday Inn West, Thorpe Wood, Peterborough, cost £55 each or £500 for a table of ten.
Call Sue on 01733 211720 or 07894 253931.