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Alamosa boy's rare stiff skin condition worsening

Posted at 12:31 PM, Nov 17, 2017
and last updated 2017-11-18 00:35:43-05

ALAMOSA, Colo. -- In a remote place where Wi-Fi is hard to come by, a 12-year-old boy wants to be an animator when he grows up.

"I don't have a very strong computer," said Jaiden Gullickson, demonstrating that his computer can't keep up with his abilities. "Click on render settings, and turn off ambient occlusion. I learned about this myself. It improves the frame rate significantly."

But his mother is worried he may never get the chance to do what he wants. 

"You know something is wrong when a doctor says, 'Do you have time to talk,' and 'I'll need you to sit down for this,'" said Natlie Rogers, who has been fostering Jaiden since he was an infant.

She said that five years ago, Jaiden was a regular kid in Alamosa, playing soccer, running and hiking. Then, everything changed.

 "We found a quarter-sized hard spot on his right thigh and really didn't think anything of it, and took him to the doctor," said Rogers. 

A biopsy revealed a syndrome so rare that only 43 other people in the world have been diagnosed with it.

"There's definitely not any support groups for Stiff Skin Syndrome," said Rogers, who often just described it as Jaiden's skin "turning to stone." 

"It's really hard to explain to people because there is the term of he's turning to stone kind of thing. It is hard like stone, or like the doctor said marble. It gets really hard."

By the time Dr. Lisa Swanson, a pediatric dermatologist in the Denver area, started treating Jaiden, he had already been diagnosed with the rare condition. It was slowly moving across his back, ribs and hips, making it difficult for Jaiden to walk and even breath. He is in constant pain.

"Stiff Skin Syndrome causes a fibrosis or thickening of the deepest layers of our skin," said Swanson. "We don't know what causes it. If you look at all the 43 patients, no two are identical in the way their condition manifested, the severity of it, the extent of it. It's all so different."

Because it is so rare, there is no standard treatment approved for Stiff Skin Syndrome, although doctors agree regular physical therapy can help.

"I think anybody who is treating a person with Stiff Skin Syndrome is kind of flying by the seat of their pants," said Swanson. "At a meeting of pediatric dermatologists, I asked anybody who would talk to me, 'Hey, have you ever treated somebody with Stiff Skin Syndrome? What would you think to do?'"

After years of experimenting, Jaiden started taking a chemotherapy agent normally used to treat cancer. Dr. Swanson's goal was to stop the spread of the hard skin, but she never thought she would reverse it.

"I am amazed to see some improvement," said Swanson. "There was about a year period where every time I saw him, there was actually less Stiff Skin Syndrome."

Still, Jaiden is home-schooled in Alamosa because the pain and other side effects of the condition are not getting better. He is on several pain medications.

He hates all of the attention, but he wants people to know about his disease.

"So people will quit staring," he said. "Some people might think it's contagious, which is pretty stupid."

His mother says the attention is important.  Every other week, she drives him from Alamosa to Denver for doctors appointments. She is concerned about the long-term effects of the chemotherapy medications and the disease, and hopes someone will have new answers.

"I have to keep his story going just to hopefully get somebody who knows something about it," she said, saying she hopes doctors in Europe might have some experimental medication to try.

To donate to the fund for Jaiden's medical expenses, click here.