Four-year-old boy from Co Down with sight loss enjoys magic of first Santa letter

Conor Murphy was a much longed for baby. Born at 37 weeks, he had gorgeous blonde hair and bright blue eyes. Mum Jolene and dad Finbar were happily in their new baby ‘bubble’ and everything seemed fine at Conor’s eight week check up. However, mum Jolene says, it was just a few days later that she started to have concerns about her little boy’s eyes.

She says: “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. 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 are responding to light, and two weeks later he also had an MRI. “It was very overwhelming, Jolene recalls. “Your whole world is shattered. The thought that there might be something ‘wrong’ with your perfect little baby.”

Conor was diagnosed with foveal hypoplasia, an underdevelopment of part of the retina, and associated nystagmus, where the eyes move involuntarily from side to side. At the time, his parents were told his condition was ‘just one of those things’. However, the family have since undergone genetic testing which has identified a possible link to albinism.

Despite this, mum Jolene is very pragmatic in her approach. “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.”

The Murphy’s have been receiving advice and support from RNIB since Conor was just six months old. Jolene says that going to family days organised by the charity was a big help as they came to terms with Conor’s sight condition.

“It made me realise that, even if they are diagnosed with the same eye condition, no two people see in the same way,” she said. “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.”

There is already a lot of excitement in the Murphy household as 25 December approaches and top of Conor’s list is a Paw Patrol lookout tower. “This is the first year he really understands,” Jolene 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.”