The Watson family are holding a family fun day at Killeague Church Hall, Coleraine, this Saturday to raise vital funds for Great Ormond Street Hospital Children’s Charity.
Little Oliver Watson, whose mother is from Armoy, is leading this fundraising effort to thank Great Ormond Street for their ongoing care and support in dealing with his illness - Muckle Wells Syndrome, a rare degenerate disease which can affect all organs and joints.
Oliver is currently the only person in Northern Ireland diagnosed with the condition. The disease affects one in a million people and there is a great possibility that Oliver will go deaf in adolesence. Doctors are already investigating the beginning of kidney damage. He also has a highly rare eye condition. Oliver was about two when he was diagnosed as having acute idiopathic urticaria - which basically means a rash with no obvious cause.
His parents, Gary and Cathy, who now live at Killeague Road near Macosquin, said on their justgiving site: “Through time we thought Oliver had learned to accept his ‘spots’ and often referred to him as our special spotty little man. However when he was four-years-old we were shocked to find that he had coloured his feet in yellow in an attempt to cover the spots and at one stage had even attempted to cut his spots off with scissors!”
Following a visit to a dermatologist in April 2011, Oliver was diagnosed with a rare form of Muckle Wells Syndrome and after much persistence by his mum and dad was treated at Great Ormond Street. Oliver went through a year of daily injections which were extremely painful and difficult to administer. However there was better news for the family earlier this year when doctors managed to get Oliver transferred on to an eight-weekly drug, the same as the other children in England use.
Oliver’s great uncle is doing a sponsored gliding challenge and the family is hoping to raise £5ooo for the charity.
Oliver, 7, who is a pupil at Castleroe Primary School, said: “Oliver said “Great Ormond Street are my heroes and I’m looking forward to raising as much money as possible to help other boys and girls like me, as well as having lots of fun at our fun day!”
His parents add: “As a family we’ve been through a tough time over the past few years. However, we are well aware that there are others out there who have more to contend with than us.
“We would like to give something back and have decided to raise money for Great Ormond Street so they can be there for other families.