Four-year-old with sight loss enjoys magic of first Santa letter
By Rebecca Black, PA
A four-year-old boy from Co Down with sight loss has experienced the magic of his first letter from Santa.
Conor Murphy from Banbridge has been diagnosed with foveal hypoplasia, an underdevelopment of part of the retina, and associated nystagmus, which affects how clearly he can see.
He was able to enjoy his first Santa letter thanks to a large print accessible version created by the Royal National Institute of Blind People (RNIB).
His mother Jolene said she started to have concerns about his eyes just after his eight-week check-up.
“I noticed his eyes sort of swaying from side to side. I wondered if maybe he was just trying to focus more on things but when I mentioned it to my health visitor she seemed concerned,” she said.
“He wasn’t ‘tracking’ with his eyes and she referred us for tests.”
At just 10 weeks old, Conor underwent electrophysiology, which measures how well the eyes respond to light, and two weeks later he had an MRI scan.
Ms Murphy said it was “very overwhelming”.
“Your whole world is shattered, the thought that there might be something ‘wrong’ with your perfect little baby,” she said.
The family has since undergone genetic testing which has identified a possible link to albinism.
But Ms Murphy said her son is otherwise “hitting all his milestones”.
“He has a slight misspelling in his genetic code, but he’s still just Conor, a diagnosis doesn’t change our day-to-day life,” she said.
“He’s hitting all his milestones – he walked at 13 months – and he has now started school.
“He has one-to-one help but we’re only a couple of months in, so are still figuring out what we can do to assist him – for example having a slant board to raise up his worksheets, using a darker pencil for contrast and making sure things are photocopied clearly.”
She paid tribute to the RNIB which has been supporting the family since Conor was six months old, including organising family days.
Ms Murphy said: “It made me realise that, even if they are diagnosed with the same eye condition, no two people see in the same way.
“I love hearing stories from other parents and RNIB staff about how children with visual impairment have gone on to lead full, happy, independent lives. That’s all anyone wants for their child.”
Approaching Christmas, Ms Murphy said she was delighted this year to get Conor an accessible Santa letter thanks to the RNID so he could experience the excitement of anticipation ahead of the big day later this month,
Top of his list for Santa is the Paw Patrol lookout tower.
“This is the first year he really understands,” she said.
“Last year I sent off for a letter to Santa from a random website and when it came it was in a really scrolly text – I could hardly read it and I don’t have a vision impairment!
“All children should be able to share the same excitement by making Christmas accessible.”
