My boy is turning to STONE – we’re in a race against time to save him
A TEENAGER with a rare condition has been left unable to breathe unaided and is at risk of becoming entombed in his own body.
Jaiden Rogers suffers from Stiff Skin Syndrome which is a condition that causes the skin to harden as it spreads throughout his body.
The 16-year-old has spent two years on a ventilator as his rock-hard skin presses on his vital organs, leaving him unable breathe independently.
He was first diagnosed with the condition in 2013.
Since then he has baffled doctors with his condition and has also started experimental stem-cell treatment in Italy.
The Colorado, US, family has now been left with a £1.1 million medical bill for the treatment that has managed to slow down Jaiden's illness.
They are in a race against time to save Jaiden and are in desperate need of donations so that he can get the treatment he needs.
Mum Natalie, 56 said it's a matter of life or death for her teenage son.
She explained: "We think that currently, Jaiden is the only person in the world with Stiff Skin Syndrome and he is only the 41st person on record to ever have it.
"He's basically paralysed, if it spreads further over his heart and lungs, he's going to die.
"Since his diagnosis, we've had to move all over the place to see specialist because not many understand his condition or have even heard about it.
"We even had to move from Colorado to Georgia just so he was in a state with a lower altitude so he could breathe better."
Jaiden was diagnosed with the condition in 2013 after Natalie found a lump of hard skin on his thigh.
It soon spread to his arms, legs, stomach and neck.
It's heart breaking to see him in so much pain everyday
Jaiden's mum Natalie
Before his diagnoses Jaiden had loved to play football but is now destined to spend the rest of his life in a wheelchair.
Natalie has previously spoken about how devastating the diagnosis was for the family and had warned that if Jaiden couldn't get to Italy for treatment, then he would die.
Jaiden has previously had chemotherapy which was unsuccessful at slowing down the condition.
He is currently receiving treatment in Italy, but mum Natalie said that even though it is working, her son is still very unwell.
What is Stiff skin syndrome (SSS)
Stiff skin syndrome is a rare skin condition and is characterised by hard, thick skin on the body.
The thickening of the skin can make the sufferer immobile and can cause joints to get stuck in a bent position.
It is caused by a gene mutation.
What are the signs?
The condition will often present at birth or in childhood and symptoms include:
- Excessive hair growth
- Loss of body fat
- Muscle weakness
- Slow growth
- Weakness of eye muscles
"We essentially need a $1,000,000 (£746k) because he is on ten different medications including chemo medication and heavy pain killers - if he stops the treatment, it will spread further and he will die if it crushes his organs", she added.
Natalie and her husband Tim Rogers adopted Jaiden after he was found neglected and malnourised.
He also has autism and is the youngest sibling in the adopted family.
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Natalie said: "He is such an incredible boy. He can't communicate so well but it's heart breaking to see him in so much pain everyday.
"He is absolutely obsessed with Ed Sheeran, who helps pick up his mood, during the dark days."
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