Our teenage son is ‘turning to stone’ and is becoming entombed in his own body
A TEENAGE boy has been warned he could become entombed in his own body as he battles a rare skin condition.
Jaiden Rogers has Stiff Skin Syndrome, a disease which causes the skin to harden.
His Mum Natalie says he is “turning to stone” due to the condition that has left the 15-year-old confined to a wheelchair and at risk of organ failure as his stone-like skin presses on his lungs and heart.
Jaiden was diagnosed with the condition in 2013 after mum Natalie, 54, found a lump of hard skin on his thigh.
It soon spread to his arms, legs, stomach and neck.
Natalie, who is a stay-at-home mum, said: "Jaiden is basically turning to stone and it's become so hard that he can't really move his legs.
"If he doesn't get treatment, doctors say he'll become entombed in his own body.
"His whole body is turning to stone because this disease starts from the inside and works it way to the skin.
“Once it reaches his skin, it means all his body underneath is also hard like stone."
She said the skin has now started to compress on his heart - leaving him unable to breath without a ventilator.
“It's pressing on the other organs so they will start failing.
"His future doesn't look good."
Natalie and her husband Tim, 56, are now to pay for Jaiden to get to Italy where he will be able to receive treatment which will help stop the disease before it crushes his lungs.
The mum-of-three, from Colorado, US, said: "If we don't get him to Italy, he won't live.
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
"Once he has treatment to stop the progression of the disease, he'll be able to have therapy to help loosen the skin.
"The doctors think he's the only one in the world with the condition and there's only been 41 documented cases in the world.
"It started when we found a hard spot on his thigh.”
She said that at first, no one really thought anything of it.
“We took him to the doctors and after some tests, the doctor called me and told me to sit down.
"That isn't what you want to hear from a doctor.
"I'd never heard of the condition before and most doctors haven't heard of it so I didn't think much of it until they continued telling me what it would do.
"Within three months it had really started spreading down his leg and he needed a wheelchair.
"It was horrible and he was in severe pain."
Before being diagnosed Jaiden loved to play football.
Now the teen is destined to spend the rest of his life in a wheelchair despite taking chemotherapy medication to help slow down the spread of the disease.
Jaiden has also had to drop out of school and is currently being taught at home by his parents.
Natalie said: "He's very quiet about it, he doesn't like talking about it but he cries because it hurts.
"He used to love going to the park and playing soccer and he's obsessed with Ed Sheeran.
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"He was so active, he was all over the place like any other kid but now he sleeps most of the day because of the pain killers he's on.
"This disease has caused him to have no friends because he is in so much pain.
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"He'll always be in a wheelchair and we can't change that but we need to get him to Italy so we can at least prolong his life.
"Basically, if we don't get him there, he won't live."