A teenager from Wrexham suffering from a rare genetic condition has been awarded an Enable grant for a supportive specialised chair to make his life easier.

Kamil, aged 16, has a diagnosis of Multiple Sulfatase Deficiency, which affects his brain, skin and skeleton, and is a degenerative condition which means he is unable to walk or have the balance to sit and hold himself up.

At home Kamil receives all the support necessary from his mother and, at school, St Christopher’s in Wrexham, Kamil receives one-to-one assistance in his education.

“At school Kamil also benefits from a specialised chair to provide the support and comfort he needs, and keep him in a safe and stable position to help with his learning,” says Karen Charles, Enable Funding Officer with the Steve Morgan Foundation.

“The chair is secure enough to allow staff to move away from Kamil for short periods and know that he is safe.

“Over the school holidays Kamil’s family were able to borrow this chair, making their lives a lot easier, particularly for feeding.

“He naturally keeps his head in a flexed position so the chair is able to tilt which means a safer position to reduce the risk of him choking.

“Unfortunately the chair had to be returned to school after the holidays and it was impracticable for the family to borrow it on a daily basis.

“We have been delighted to provide an Enable grant for a duplicate specialised chair for Kamil to use at home, making life far easier not just for Kamil but also his parents and the whole family.”

Kamil’s mum Joanna has been delighted with the new chair, the result of an Enable grant of just over £2,000.

She added:  “We are really thankful to the Steve Morgan Foundation for the award for the new chair.”