Chin strap transforms Kamil’s life

Life has become a bit easier for a North Wales teenager born with a rare genetic condition that only affects 100 people in the world.

Kamil Krasowski, 18, from Wrexham has Multiple Sulfatase Deficiency (MSD), which affects the brain, skin and skeleton. It is a degenerative condition and means that he is unable to walk unaided and needs support to sit or hold himself up. 

The teenager attends St Christopher’s School, in Stockwell Grove, Wrexham, where he uses a chin strap to help with his eating and drinking.

Unfortunately they cost £989.20 and his mum Joanna couldn’t afford to buy one for him at home so she appealed for help from Steve Morgan Foundation for Enable Funding, which provides specialised disability equipment.

The Steve Morgan Foundation bought Kamil a £2,167 specialised Panda Futura chair in August, 2018, and were happy to help for a second time.

Mum Joanna  said the chin strap had already made a big difference.

“I’m really grateful to the Steve Morgan Foundation for helping us twice,” she said. “It makes our lives a bit easier. It helps keep Kamil upright which helps with his eating and drinking.”

Joanna, who has two other two children, suspected something was wrong with Kamil when he was two but it took another 13 years for him to be diagnosed with Multiple Sulfatase Deficiency. 

“At the age of two I realised he had a problem with his speaking,” she said. “At that age he could walk around but MSD is such a rare condition it wasn’t until he was 15 that he was diagnosed. 

“Since then his condition has deteriorated and I have to hold him when he walks around because he has problems with his balance so we have to do everything around him.

“Over the last three years his sight has almost gone completely.  In 2016 he was still able to support his head in an upright position for eating and drinking.  Unfortunately his health condition has deteriorated meaning his head falls forward and he takes a lot longer to eat. This makes it harder to hold liquid in his mouth and causes him to be fatigued.

“Kamil was provided with a chin support at school and the benefit to his eating and drinking was immediate so we approached the Steve Morgan Foundation for help to buy one at home and it’s made a big difference to his posture and helped keep his head upright.”

Jane Harris, director of regional funding at the Steve Morgan Foundation, said: “Cases like Kamil’s are the reason why we set up the Enabled Fund. Although it’s a relatively small award we know it will make a big difference.”

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