‘Perfect and unique’ – Brave Inverness youngster (3) just one of 20 in the world with extremely rare genetic disorder
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A young Inverness boy is just one of 20 in the world living with a genetic disorder limiting his physical and mental development.
Aaron Nisbet (3) was born with Temple-Baraitser Syndrome, although he was more than a year old before he received the diagnosis.
The first signs that he was a sufferer came in the fact that he was born without either thumbnails or nails in his big toes, a common trait.
But the condition also means he is developmentally delayed.
He might never be able to walk or talk and cannot swallow.
His body is also “floppy” as he cannot tense his muscles properly and his long-term prognosis is uncertain.
While the oldest known person living with the syndrome is 22, Aaron’s mum Jemma (32) says she has heard of two children with Temple-Baraister who were under the age of 10 when they died.
Despite this she and her family, including husband Lee (36) and Aaron’s older sister Ellie (7), are determined to remain positive, even if that proved difficult in the very early days.
“I just asked ‘Why me? Why my little boy?’” Mrs Nisbet said of first receiving the news that all was not well with Aaron.
“The first year-and-a-half were probably the hardest – I did what most mums would have done and distanced myself from him.
“There were lots of tears, lots of denial and lots of feeling sorry for myself.
“But he is perfect and unique. He’s just my boy.
“You have to fight, don’t you? You just fight for him like you would for anything.
“We are determined he gets the best and easiest life possible.”
The family moved from Fife to Inverness following Aaron’s diagnosis.
While Mr Nisbet is based with the army at Fort George as a lance corporal in the Black Watch, Mrs Nisbet is a manager at The Entertainer toy shop in the Eastgate Shopping Centre.
Aaron attends the Butterfly Room for children with special needs at Cauldeen Nursery and according to his mum is making good progress.
“We were very lucky to get a place in the nursery – there are only four kids in his class,” she said.
“He can crawl now – it’s taken us three years but he’s definitely mobile.
“He also has his own way of telling us he wants things – and he has a very loving big sister who takes it all in her stride.”
Mrs Nisbet uses as much of her free time as possible to raise money for special therapies and equipment to support the nursery and Aaron.
Last month she took part in the Loch Ness Beast Race, a 10km obstacle race that sees competitors climbing and wading at least as much as running.
“It was the best experience ever,” she said. “I’ve never done anything like that in my life.”
In the face of heavy rainfall on the day she said: “We woke up that morning and it was literally ‘Are we really going to do this?’ But we couldn’t back out because of the money that had been promised, and we smashed it!”
Bolstered by donations from her employers Mrs Nisbet’s effort has raised more than £2000.
