The north mother of a boy with a rare muscle condition that leaves him unable to use his arms is appealing for product designers to come forward with ideas to help make life easier at home.
Charlie Thomson is as active and fun-loving as any other five-year-old, but the daily tasks his friends might take for granted like eating, brushing teeth, getting dressed and going to the toilet, are much harder for him.
The youngster from North Kessock on the Black Isle, was born with a condition called arthrogryposis multiplex congenita (AMC) – a debilitating disorder that affects no two people the same. He has no muscles or nerves in his shoulders, elbows, hands and fingers.
His parents, Evie Knight and Ross Thompson, had pinned their hopes on a nerve and muscle transplant operation for their son last year, but surgeons realised that the muscles they planned to take from his legs were also affected.
They have since contacted a pioneering consultant from Leeds who is familiar with their son’s condition and has given them hope for another operation – but a date for pre-operation scans is yet to be fixed.
Yesterday Miss Knight told The Press and Journal: “I just worry so much about when he gets older, and he is nearly six, and before I know it he will be going to high school, and I dread it and panic because children can be mean. He will get picked on, it’s going to happen, and I just want to do something to prevent it being really bad.
“My main fear is him going to high school and having to be escorted to the toilet at the age of 13. I need to get the ball rolling now for ideas to help with dressing, going to the toilet and eating”.
While scrolling online, Miss Knight recently discovered a newly invented eating device which is being used by AMC sufferers in the US, but says it would cost her about £300 to purchase and ship over.
The contraception is held to a table with suction caps and on top there is a strong magnet to attach a fork or spoon, and the device can then be adjusted by the user to bring the implement up to the their mouth.
Currently, Charlie has to stand up to bring a fork away from his plate, then lean over to eat, and then sit down again to collect his next forkful.
Miss Knight is hoping there is someone out there in the UK who might know how to build such contraptions to help Charlie with the tasks he finds most difficult.
