A YOUNG boy battling a rare and incurable condition that has left his body 'held together with steel' has been hailed for his bravery.

Kyle Smith, 13, suffers from Pelizaus Merzbacher Disease (PMD) a progressive, genetic disorder affecting the central nervous system that causes symptoms similar to Cerebral Palsy and primarily affects boys.

When doctors discovered he had the condition at 18 months, he was the first Scot in ten years to be diagnosed with it. His mother Sam is a carrier but has no symptoms because she is female.

The disorder has causes Kyle to develop severe Osteoporosis, which normally affects the elderly, leaving him in excruciating pain.

If he is not lifted correctly, his bones could crumble and break and he is now unable to spend more than two hours in a wheelchair.

Kyle, who is from Airdrie in North Lanarkshire, has already had two full hip reconstruction surgeries at 10 and 11, an an operation in May to weld the bones in his spine together.

During the spinal fusion surgery doctors discovered his vertebrae was almost completely cutting off the oxygen supply to his left lung, which had left him unable to breathe properly for two years.

After the surgery, Kyle developed a serious infection in his wound and almost died after developing Sepsis and Pneumonia.

Despite all this, Sam says her "warrior" son has remained cheerful through every stage of his treatment.

She said: "Kyle now has so much metal instrumentation holding him together that if he is not moved properly his bones could break, causing unimaginable pain.

"As such I am now unable to lift him and he cannot tolerate his wheelchair for longer than two hours.

"The surgeon initially just planned to stabilise his pelvis but a CT scan the day before surgery revealed his spine was almost completely cutting off the air to his left lung.

"He had been having breathing problems for two years.

"He was also treated for Sepsis and Pneumonia, spending a total of ten weeks in hospital.

"Throughout it all Kyle remained incredibly brave. He was smiling, laughing and joking constantly and although he had days you could tell he was scared and had had enough, he soon bounced back to his cheery wee self."

Kyle suffers from Classic Pelizaeus-Merzbacher disease, which causes neurological problems and intellectual and motor skills generally stall around adolescence. There are thought to be less than 20 cases in the UK and most patients are unable to walk or even sit unaided.

While younger children with the condition are now benefitting from pioneering therapies, including stem cell treatment, Kyle has reached an age where they would do little to help him.

Instead, his mum is trying to ensure the "outgoing" teenager has the best quality of life possible.

She is aiming to raise £6000 to convert a patient transport vehicle into a campervan with a bed and a hoist so he can continue to enjoy holidays and day trips.

She said: "Kyle is a very sociable kid. We have ventured all over Scotland together, staying in hotels, castles, caravans and campsites. Going to festivals together is one of our favourite things to do.

"I’ve done my best to ensure his life experiences are not limited by his physical disabilities.

"We still have so much more to do and I need some help to keep him out enjoying his life to the fullest."

"The aim is to raise enough funds to buy Kyle an ex ambulance to turn into an accessible camper van, complete with hoist and bed to lie him out.

"This will allow Kyle to travel safely lying down and we can go anywhere.

"It means after two hours he can go back to his van, have a lie out and stretches on his legs. Then go back to enjoying himself, without having to go home."

Sam is taking part in a sponsored walk at Coatbridge Lochs on Sunday, September 22, while her friend Alexis is doing a 500 mile static cycle to raise funds for the van.

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