CENTENNIAL- Nine year old Jaiden Rogers of Alamosa is just the 42nd person to be diagnosed with stiff skin syndrome. It's a rare and rapidly progressing connective tissue disorder that hardens the skin and makes the muscles difficult to move.
It started as a small patch of stiff skin when he was six years old. A biopsy revealed his condition and his family has been looking for a solution ever since.
"There are times when you don't get sleep and you're on the internet trying to find something that's new," said Jaiden's mom, Natalie Rogers.
As much information as there is online, there is little about stiff skin syndrome. With so few diagnosed patients, attempts to rid Jaiden of the immobilizing disorder are largely experimental and so far ineffective.
"As the condition continues, everything gets tighter. Moving becomes much more problematic and much more painful. It's like putting your hips in a cast and trying to move around. It's uncomfortable," said Dr. Elizabeth Swanson, a dermatologist in Centennial who sees Jaiden every three months.
Not too long after the diagnosis, the calcifications began entering Jaiden's joints, eventually putting him in a wheelchair where he spends most of his time.
He's been through chemotherapy to try and stop the spread of the calcifications. He has been prescribed methotrexate and prednisone to try and attack the syndrome. Both failed to help and he's since stopped taking those meds.
Now it's a steady intake of pain medications that make him very tired. And now another drug, Gleevac, that seems to be showing some promise.
"We have noticed a couple of new areas but it used to be much worse every time I saw him. The new areas that are developing aren't as extensive as the areas that previously were developing. So I am cautiously optimistic," said Swanson.
Without the ability to move like he once did, Jaiden likes to play video games. He also has a sense of humor, continuously making faces at the 9NEWS camera while the doctor examines his hardened skin.
He likens his struggle to that of a Pokemon character.
"It's just like Ash Ketchum in Pokemon," he said. "Because Ash never gives up."
Jaiden spends quite a bit of time in doctor's offices and his family spends a lot of time paying those bills. They are also hoping to make their home entirely handicap accessible and will be hiring a nurse to help with Jaiden's therapy and pain management.
To donate to Jaiden and his family visit www.youcaring.com/Jaiden
