A SPECTACULAR fund-raiser is to be held on the riverside to raise money for research into a rare disease a brave city boy is suffering from.
Connor Wright was diagnosed with the rare Shwachman-Diamond Syndrome in 2005, and since then has been on an intensive course of medication and has made regular hospital visits.
The disease affects the 11-year-old’s bone marrow, and Connor has a da
ngerously low white blood cell count – just 0.5, compared to most children, whose count is normally between seven and 15.
White blood cells help fight off infections, and the boy, from Crowland near Peterborough, cannot go to school because of the fear of picking up an illness.
A bout of flu could leave him in hospital.
But after his family helped to raise more than £17,500 for research into the disease last year, Connor’s health is as good as ever.
Connor is one of just 20 people who suffer from the disease in the country, and only 200 world wide.
Connor’s aunt Rachel Farrington said: “After raising the money last year, Connor has been used almost as a guinea pig in the research, and the doctors have found a lot out about his blood and his pancreas. He is now on a new course of medication, and his health has not deteriorated for a long time, which is fantastic news.”
To help fund more research into the disease, Connor’s family has organised an It’s A Knockout-style competition on the Embankment on Saturday, September 16 to raise money for the Connor Wright Shwachman-Diamond Project, which is run in association with Great Ormond Street Hospital.
The day will start with music from Peterborough band Hooker, before the games get under way just after noon.
There will then be a mini-festival starting at 5pm, with several more Peterborough bands playing.
The headline act will be Leon Lopez, who after starring as Jerome Johnson in Brookside has recently been given the lead role in West End musical Rent.
Mrs Farrington, who is helping organise the event said: “I never realised how much work went into organising something like this, but it is going really well. We have plenty of stalls and bands booked for the day, and we think it will be a real success.
“To get Leon was a real boost, as he is being hyped as the next big thing.”
There are already 12 teams booked for the competition, but it is hoped that more will enter before the day.
nAnyone interested in entering the competition should call Mrs Farrington on 07944 939740.
The full article contains 447 words and appears in Peterborough ET newspaper.
