The little boy who can’t play in the sun
FAMILY RAISES MONEY TO REMOVE HAZARDS SO BOY WITH EYE CONDITION CAN HAVE FUN IN GARDEN
George needed two operations on both eyes when he was just week sold-now his family are raising funds to make the garden safer for him
Playing outside in the sun is something every child enjoys – but for a little boy from Sunderland it is sadly off limits.
When Nicola Hoggarth was 18 weeks pregnant, her and husband Steven were told their son George had Axenfeld-Rieger Syndrome – a rare disorder which predominately affects the eyes.
It means George, who has recently turned two, is extremely sensitive to sunlight and isn’t able to play outside in his own garden.
George needed two operations to have a cornea transplant in both eyes when he was just weeks old.
And scarring and infections have led to the battling youngster losing his sight in his right eye while sight in his left eye is severely impaired.
George, who lives in Silksworth, had his first operation when he was just two weeks old.
Mum Nicola said: “George has Axenfeld-Rieger Syndrome, which is a genetic condition that he got from myself.
“I didn’t know I had it until I was pregnant.
“He was required to have two cornea transplants, which he had done when he was 12 and 16 weeks old.”
Surgeons will be repeating both of the transplants in Manchester in the future.
“It will give him slightly more in his left eye,” said the mum-of-one.
“He’s really sensitive to sunlight and it makes it really difficult for him to go outside.
“Our garden is so exposed to sunlight. He wouldn’t think twice to just close his eyes and run, and he could fall and really hurt himself.”
George needs eye drops every hour throughout the day as his eyes don’t self-lubricate.
After operations and during infections, little George has needed drops every half an hour even during the night.
This year, cash raised at the annual charity fundraiser in memory of Allan Thompson – who died in July 2000 aged just 43 after a lengthy battle with leukaemia – will go towards helping to making the garden safe for little George.
Special sails will help shade his garden and allow him to play outside with family and friends.
Nicola, a nursery nurse, said: “In the garden we have a wall that isn’t very tall that splits the grass and the concrete.
“It’s too low down that George can’t really see it, and there’s a drop from the grass to the concrete on the other side.
“We’re looking at levelling out the garden or putting a ramp or wide stairs.”
Maureen Thompson, who has been organising the fundraiser for more than 20 years, found out about George through Nicola’s aunt.
Maureen, 61, said: “I lost my husband Allan to leukaemia 18 years ago.
“At first we raised funds for the hospital and then he decided he wanted to do it for children – he never got to see that.
“I’ve carried on doing it in his memory.
“We always try to raise as much as we can. The nights are fabulous and there are tickets still available.”
Nicola added: “I just thought it was lovely that she can help someone in the community and she chose to help us.
“It would just be amazing. With our garden being the way it is, it’s not safe for him.
“He doesn’t get to go in the garden so we take him out to the park but we have to constantly watch out for things that could be dangerous for him. He can’t see the dangers.”
The youngster is developing well and now has transition lenses which do help in sunlight, but George still struggles in bright light.
Nicola added: “He’s a very determined and resilient. He’s funny and sociable and he likes to engage people in everything he’s doing. He’s just a lovely, good-natured little boy.”
“With our garden being the way it is, it’s not safe for him” MUM NICHOLA