A campaign has been launched to help a youngster with a medical condition so rare it does not have a name communicate with the wider world.
Seven-year-old Aiden Matheson has an extremely unusual genetic condition that has so far proven impossible for doctors to diagnose.
When he was first born, it was thought he had cerebral palsy, but as he got older he developed a number of other physical, as mental, disabilities.
He is unable to sit up straight, walk unaided and has severe scoliosis – with doctors worried the extreme curvature of his spine could damage his vital organs.
Aiden also has learning disabilities, which prevent him from communicating verbally, or from writing.
And although his mum Sue, 53, and big brother James, 13, can both understand Aiden, they now want him to be able to communicate better with the wider world – and are aiming to raise £3,000 to help him do so.
Specialist eye-tracking software Eye Gaze gives those gives those with severe physical disabilities the ability interact with a computer using just their eye movement.
The family hope to raise £3,000 to buy the system, and “open up a whole new world for Aiden”.
Mrs Matheson, of Longside, said: “It would mean it would be a lot easier for him to communicate with people outside the family, meaning he would have more choices.
“The thing is, at the moment you know he’s sore because he cries – but because his arms won’t go where he wants them, he finds it hard to tell you where the problem is.
“The Eye Gaze would make communicating for him a lot easier, and much faster.”
Mrs Matheson said that without a name for her son’s condition, finding the correct medical treatment proves very problematic for his doctors, particularly when treating his scoliosis.
And she revealed that whenever a new symptom appears, doctors are left scratching their heads wondering whether or not they are part of Aiden’s sickness.
She said: “You don’t know whether it’s normal childhood illnesses, or whether it’s to do with his condition when something goes wrong.
“One issue that’s come up is that doctors don’t normally operate for scoliosis until their age is in the double figures.
“But we’ve been asked to make the decision now – because in a cerebral palsy kid they wouldn’t have expected the level of curvature that he has, it has advanced very fast.
“And because we don’t know what the condition is, we don’t know why it’s advancing this fast -so we don’t know what’s going to happen in the future.
“If we knew what was going to happen, and we knew that his scoliosis would stop now, then we wouldn’t need the operation, but as it’s going now he’s going to need the operation, otherwise his internal organs will get squashed, and it will get to the stage where he won’t be able to breathe clearly enough to have it.”
Aiden’s big brother James said: “He loves singing at school, swimming, and the big parachute. And although he can be a little annoying when he smacks me, because his arms flail, he’s very chatty and can always make you laugh, especially when you’re feeling down.
“I like to help to feed him when I can, and we do sensory exercises together too – and he loves his music.
“We love him a lot.”
To support the fundraiser and help Aiden communicate, visit www.justgiving.com and search for Sue Matheson.
To find out more about the charity Syndrome Without A Name UK (SWAN UK) and how they help undiagnosed children across the country, visit www.undiagnosed.org.uk
