Meet the Colorado boy, 10, who suffers from a rare condition that's turning slowly him to STONE 

  • Jaiden Rogers, 10, is slowly turning into stone due to stiff skin syndrome
  • Three years ago his parents noticed spots on his skin were hardening
  • Doctors recently tried chemotherapy drugs, which have slowed the spread 
  • Jaiden also does physical therapy to help keep his joints limber

By Valerie Edwards For Dailymail.com

Published: | Updated:

A Colorado boy is slowly turning to stone due to an extremely rare skin condition. 

Jaiden Rogers' skin condition is so rare that his case is the 41st case to have ever been reported.

Just three years ago, his parents noticed some spots on his skin were hardening and now more hardened spots have spread to other areas of his body. 

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Jaiden Rogers' skin condition is so rare that only 40 other cases have ever been reported. For years, Jaiden has been seen by several doctors who continue to search for answers. Doctors have determined his condition is stiff skin syndrome 

Jaiden Rogers' skin condition is so rare that only 40 other cases have ever been reported. For years, Jaiden has been seen by several doctors who continue to search for answers. Doctors have determined his condition is stiff skin syndrome 

As Jaiden's symptoms worsen, he continues to be in pain, but he can't describe how it feels. For now, there's no cure and really no treatment

As Jaiden's symptoms worsen, he continues to be in pain, but he can't describe how it feels. For now, there's no cure and really no treatment

For years, 10-year-old Jaiden has been seen by several doctors who continue to search for answers. 

His father, Tim Rogers, told FOX 31 that Jaiden's leg feels like you're 'tapping on a counter top' or a hard surface.

The spots have spread to his legs, back and hips, and it has made it difficult for him to walk. One day Jaiden told his parents that his legs didn't work and he needed a wheelchair.

Doctors have determined his condition is stiff skin syndrome.

Jaiden's mother, Natalie, told FOX 31 that 'it's kind of outrageous sounding when you say a boy turning to stone'.

As Jaiden's symptoms worsen, he continues to be in pain, but he can't describe how it feels. For now, there's no cure and really no treatment.

Dr Elizabeth Swanson with the Children's Hospital in Colorado said that she had 'kind of exhausted the medical library trying to come up with a treatment'.

Doctors have tried chemotherapy drugs, which seems to have slowed the spread for now

Doctors have tried chemotherapy drugs, which seems to have slowed the spread for now

The spots have spread to his legs, back and hips, and it has made it difficult for him to walk. Jaiden also undergoes physical therapy to help keep his joints limber

The spots have spread to his legs, back and hips, and it has made it difficult for him to walk. Jaiden also undergoes physical therapy to help keep his joints limber

According to a YouCaring page set up by Josh Niemi, 'Jaiden’s treatment started with rounds of chemotherapy to try to halt the spread of the calcification'.

WHAT IS STIFF SKIN SYNDROME?

Stiff skin syndrome is a sclerodermalike disorder that presents in infancy or early childhood with rock-hard skin, limited joint mobility, and mild hypertrichosis in the absence of visceral or muscle involvement, immunologic abnormalities, or vascular hyperreactivity. 

Research suggests that the age at onset in some cases ranged from infancy to six years of age. Stony-hard skin was noted mostly on the thighs, buttocks, and lower back with shoulder and arm involvement in two cases.

Stiff skin syndrome is characterized by an early, insidious onset of stony-hard skin, often with associated contracture-like joint restriction, hypertrichosis, and postural and thoracic wall abnormalities.

Source: JAMA Network 

'The chemo destroys both good and bad cells, leaving Jaiden weak and open to infection. 

'He wears a medical mask to prevent infections or viruses he would not be able to fend off due to his weakened immune system,' the website reads. 

The site has raised more than $10,000 to help with medical costs such as a service dog and further treatment options in Europe. 

Jaiden's latest round of chemotherapy drugs seems to be slowing the spread for now.

Swanson told FOX 31 that once the skin hardens there's no way to reverse it. 

'We're not going to be able to bring back normal skin to that area.'

However, Swanson hopes her treatment will prevent the spread, which she considers 'a win' for Jaiden and a win for future victims of the disease. 

Jaiden's community has been really supportive throughout the past three years. 

His dad, Tim Rogers, said that when they needed a therapy pool for Jaiden's treatment, their community in their hometown of Alamosa, 'raised $8,000 to build us a therapy pool.' 

The Rogers are also considering going to Europe, where different drug therapies are available, in an attempt to explore all options

The Rogers are also considering going to Europe, where different drug therapies are available, in an attempt to explore all options

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