'It would mean a lot' - fundraiser launched to help Highland boy with rare condition

An Inverness mum is urging the public for help with fundraising for a specialist bed for her disabled son with an extremely rare condition.

Nine-year-old Aaron Nisbet was diagnosed with Temple-Baraitser syndrome in 2017.

At the time, he was only the 16th person in the world to be diagnosed and he's understood to be the only child in Scotland with the condition.

He can't walk or talk and lives with hypotonia, dystonia, hypermobility, sleep difficulties, and severe scoliosis (curvature of the spine).

Later this year, Aaron will undergo life changing spinal surgery and will require a careful recovery to avoid spinal rods to displace.

However, like many nine-year-olds Aaron loves to explore and has no sense of danger.

He regularly climbs over bed guards and knocks over furniture, with fears if he does this post surgery, it could lead to severely injuring himself.

Alongside Cash For Kids, a fundraiser has been launched to pay for a £14,000 specialist bed to protect him during recovery.

'You want to give your kids everything'

His mum Jemma explained why he requires round the clock care.

She said: "He's not fully conscious of his body movements. 

"He can move his body, but he isn't always fully aware of how he's moving it. 

"Trying to keep him safe and still is huge and quite worrying actually. 

"You can't just leave him. 

"He would happily play in his room or sit and play, but you can't just leave him because he doesn't understand. 

"He can't be protected or looked after without an adult there. 

"It's very constant."

Jemma says the Hannah Cot Bed would transform her family's life.

It has soft, high protective sides to prevent climbing and falls, viewing panels so Aaron can be monitored closely, a profiling function to safely change and dress him while protecting his spine and the ability to lower close to the floor to support his rehabilitation.

Jemma added: "If these rods come back out, it's another surgery and very painful. 

"It would just mean a lot that we would be able to have somewhere really safe for Aaron, and it does upset me that it costs so much money and I can't just give him that. 

"Because you want to give your kids everything."