THE auntie of a baby born with an extremely rare eye disorder has raised more than £700 in less than a week for charity.
Kirsty Brunksill’s nephew Charlie Bell was only 14 days old when he was diagnosed with aniridia, a condition so rare that only one in 66,000 people in the world have it.
It is characterised by a complete or partial absence of the iris and means four-month-old Charlie is visually impaired and screams in pain unless in darkness.
Kirsty, 28, of Redness Close, Nelson, said: “My sister Laura says she lives like a vampire because her blinds are always closed. Charlie has to wear sunglasses and people give her funny looks when she’s out as if it’s some kind of fashion statement.
“He has to have eye drops throughout the day because his eyes aren’t moist so it feels like there’s sand in his eyes all the time. It’s so painful for him and he is sensitive to all types of light.”
Laura attended a conference organised by the Aniridia Network UK a few weeks ago and told Kirsty it was ‘the best thing she could have done’. Kirsty said: “At first, she found it really upsetting but when she got home she was happy.
“It was brilliant for her but she told me the charity only raised £3,500 last year and needed £4,500 this year to keep going.
“I started thinking about what I could do and came up with the Great Manchester swim.”
Kirsty signed up for the one- mile swim in the Manchester Ship Canal on July 19 and has been training daily, travelling to Wigan and Carnforth for open- water swimming.
She said: “It was quite daunting but after I set up my fundraising page, I saw that people had donated £500 in the first three days.
“There was no backing out then.”
Kirsty’s fundraising has been so successful that she is already planning further events to raise money and awareness, such as a charity night and a bag pack.
To sponsor Kirsty, visit http://www.everyclick.com/charliebell.