Baby Charlie has one of UK’s rarest diseases
A caring auntie whose baby nephew suffers from one of the UK’s rarest diseases is taking on a gruelling one-mile open water swim to help raise awareness.
Little Charlie Bell was born on Sunday, February 16th, but following two weeks of tests, scans and trips to Manchester he had to undergo an operation at just 14 days old.
He was eventually diagnosed with Aniridia, an absence of the iris which affects just one in 66,000 people.
Now his auntie, Kirsty Brunskill (28), who works at CC Communications in Bancroft Road, is attempting to swim the Great Manchester Swim in Salford Quays on Saturday, July 19th, to raise money for Aniridia Network UK – a charity which only managed to raise £3,500 last year.
“It may not seem like such a big deal but Charlie is registered as blind,” said Miss Brunskill, who moved to Red Ness Close in Nelson from Burnley earlier in the year. “He has aniridia in both eyes. He was born with one eye smaller than the other. He will almost certainly be completely blind in this eye and have very limited vision if any in his other eye. His eyes can not control the amount of light that enters his eyes meaning he screams in pain if he is greeted by light. Just being near a window, going outside, the lights in the supermarket, all these cause Charlie discomfort.”
Charlie also suffers from cataracts and glaucoma and has to wear protective sunglasses to protect his eyes from any kind of light. His parents, Craig Bell and Laura Brunskill, who live in Waidshouse Close, Nelson, have to put a blanket over his car seat just to get him from the door to the car and a black out canopy over his pram every time he goes out.
Laura attended a conference last month held by the Aniridia Network UK charity which provided her with a wealth of information and support.
Kirsty said the whole family had been so overwhelmed by the charity’s support that she wanted to do something to help raise money for it.
“The charity hopes to raise just £4,500 this year and if I can just make a small dint in that I would be happy.
“Being probably the unfittest I have ever been and less than three weeks worth of training time before the event this will be a challenge for me but one look at my little nephew’s face provides all the encouragement I need to do this.
“I have been laughed off already by my nearest and dearest, I have never swam in open water, I haven’t swam or exercised in over a year and have minimal training time to train for the event.
“Please do whatever you can to support not me but the charity that is close to my family’s heart.”
Anybody wishing to sponsor Kirsty can do so by visiting www.everyclick.com/charliebell. She is also holding a raffle later on in the year and anybody wanting to donate prizes can do so by emailing [email protected] or by ringing Kirsty on 07581 366193.