As parents, the most heartbreaking thing in the world is to see your children in pain, and for the Watson family from Coleraine, the past few years have, they agree, brought some of the toughest of times.
Cathy and Gary Watson’s son Oliver, who turned seven in February. lives with an extremely rare degenerate disease known as Muckle Wells Syndrome, which affects his organs and his joints, and could possibly lead to the losing of his hearing in adolescence.
Despite displaying some of the symptoms of the condition at birth, it took five years for couple Cathy, 36, and Gary, 35, to get a diagnosis for their son (they have a younger son as well named Jamie).
Because there were no other known cases in Northern Ireland, the Coleraine couple found the lack of information about the condition frustrating, and after a lengthy struggle involving numerous emails and letters, they finally got an appointment to see specialists in Great Ormond Street Hospital in London.
Now, in a bid to thank and acknowledge the treatment, help and support staff at the world famous children’s hospital have provided for brave Oliver, the Watsons are holding a family fun day in Coleraine’s Killaig Church Hall this weekend, to raise vital funds for the Great Ormond Street Hospital Children’s Charity.
Indeed, Oliver describes the staff at Great Ormond Street as his own personal heroes, and adds that he is “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!”
It’s thought that the condition Oliver is affected by is one which just one in a million people live with, so he really is a special little boy.
His mum Cathy says that he also has a rare eye condition that affects one in a million people, and doctors are already investigating the beginning of kidney damage.
His quality of life in the future is, she admits unknown.
“He was born on February 6, 2007, and when he was only a day old we noticed he was covered in a red rash,” says Cathy.
“We put this down to a reaction to his first bath. The rash was consistently present on a daily basis and moved around his body, but we were
assured this was nothing to worry about.
“Life continued as normally as possible, with Oliver having disturbed sleeping patterns, low energy and ‘growing pains’, whilst his unsightly rash was still present on a daily basis. We continually had to reassure other parents about his rash as they were cautious about their children being in his presence
in case he had something contagious.”
Cathy says that her son gradually learnt to accept his ‘spots’, although he gave his parents a fright when he was four years old he coloured his feet in yellow in an attempt to cover them!
“At one stage he even attempted to cut them off with spots!” Cathy reveals.
“On another occasion he told us he didn’t like to look in the mirror as he didn’t look nice, like the other boys and girls in his class. It was heart breaking. We were at a loss as to what to do, but we knew we had to do something.”
Cathy says that when he was five, the family went to see a local dermatologist who was the first to be fully aware of Oliver’s case history.
“Unbeknown to us, he had his suspicions as to Oliver’s condition, and was making discreet enquiries with other specialists,” she continues. “On Wednesday April 20, 2011, we were devastated to hear that Oliver was suspected of having Muckle Wells Syndrome (MWS).
Dad Gary goes on: “As there were no other cases of MWS in Northern Ireland, we decided to take Oliver to the specialists in England. After numerous letters, phone calls, faxes and emails we finally got an appointment with Great Ormond Street Hospital. Our persistence paid off.
“Slowly the pieces started to come together - Oliver’s continuous complaints of sore limbs, nightly fevers, unexplained crying episodes, low energy levels and lethargy. Test results showed Oliver was suffering severe symptoms with worryingly high levels of certain proteins in his blood, and that he
has a rare form of MWS.”
For a year afterwards, the Watsons had to endure the horror of administering two injections daily to their son, which he found extremely painful.
“Some mornings it took up to 40 minutes to inject Oliver, with two of us holding him down,” says Cathy.
“Once again the doctors shone through for us, as earlier this year they managed to get Oliver transferred on to an eight - weekly drug, the same as the other children in England use.”
Gary adds: “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.”
The Watson’s fundraiser will take place this Saturday (August 2) at Killaig Church Hall in Coleraine, from 1-5 pm. There will be a range of fun activities for all the family, including a putting challenge, bouncy castle, loom band making, a glitzy nail bar, music and entertainment, cage football and a super hero themed photo book.
Praising the Watsons for organising the event was senior fundraising manager at the Great Ormond Street Hospital Children’s Charity Laura Savory, who said: “We’re so grateful to Oliver, his family, friends and supporters for their generosity. The money raised will help to make a huge difference to young patients and families from across the UK.”
For more information about the event go to www.justgiving.com/Gary-Watson10, and you can find out more about Great Ormond Street by logging onto www.gosh.org