“It’s pretty much our last chance.”
Natalie Rogers sits on an examination table inside a medical clinic in Littleton, watching her son, Jaiden, just a few feet away in his wheelchair playing a video game.
For the past seven years, the 14-year-old has struggled with one of the world’s rarest diseases — stiff skin syndrome. It’s a condition that has caused his skin to gradually tighten and harden, spreading from his legs to his hips and then to his stomach and neck.
Natalie says her son is “turning to stone,” leaving him unable to walk and sometimes giving him trouble breathing. He sees six doctors and takes chemotherapy drugs to slow the disease’s progression.
“He can’t expand his lungs and take a deep breath,” Natalie said. “He’s on many pain medications that make him tired.”
Natalie and husband Tim are banking everything they have that an experimental drug being developed overseas may finally ease, if not reverse, his symptoms.
“I’m pretty much going on faith,” Natalie said.
She and her husband are also going on hope — hope for kindness from strangers. The Alamosa family has set up a GoFundMe page in an effort to raise $1.5 million for Jaiden’s treatment, which includes $125,000 for a medical flight to Europe.
So far, the family has raised just over $300,000.
Dr. Margarita Saenz, Jaiden’s genetic physician at Children’s Hospital Colorado, said she knows of only 54 cases of stiff skin syndrome ever reported in the world.
“Stiff skin syndrome is a slowly progressing connective tissue disorder,” she said. “The dangerous part is if this spreads across the chest cavity — that could impact the ability to breathe.”
So far, she said, there haven’t been any medical breakthroughs that provide a “potential cure or intervention that would reverse this progressive disorder,” but she asserted, “just because it doesn’t exist doesn’t mean it’s not possible.”
“It’s not our job to take away hope — it’s our job to provide guidance to the best of our abilities,” Saenz said.
Saenz said while Jaiden tends to withdraw within himself, she has seen bursts of energy and vibrancy from the teenager.
“He is cute and funny,” she said. “I saw a sense of humor, and I saw that he was witty and quick.”
On the day a Denver Post reporter and photographer crowded into the Littleton exam room where Jaiden awaited his pediatrician for a checkup, he was subdued. Dressed in a “Dude Chill” T-shirt, sweat pants and wearing a mask over his mouth, Jaiden said little.
“He hasn’t been talkative — or he’s been crying a lot,” his mother said. “He’s still hanging in there.”
Jaiden’s pediatrician, Dr. Jim Harrington, said he worries about the disease’s effect on the teenager’s mental state — “the psychological complications of his medical problem.” Jaiden disputes that stiff skin syndrome is making him sad, though his mother has a different opinion.
“Do you feel more sad now?” Harrington asks.
“Not at all,” Jaiden replies.
“Do you worry about your disease’s progression?” the doctor asks.
“Not very much at all,” the boy answers haltingly.
Harringon describes Jaiden as a “complicated patient” due to the fact that there is more at play than just his stiffening skin. Jaiden is also autistic and has been diagnosed with attention-deficit disorder.
“What do you think about your life?” Harrington asks.
“I don’t know,” Jaiden says.
Jaiden is not related by blood to Natalie and Tim Rogers — they began to care for him when he was 2 after his grandmother, an old friend of the couple, called for help. Jaiden’s 18-year-old mother was in jail and his grandmother didn’t think she could take care of him.
Twelve years later, Natalie said the family has been on hundreds of doctor’s visits and has made efforts through numerous media outlets — including an appearance on the Dr. Oz show last year — to call attention to Jaiden’s situation.
“I’m on the computer all day just researching,” Natalie said. “It takes up a lot of time — it’s all we do.”
She said Jaiden, who is home-schooled, likes to read — Stephen Hawking is a favorite — and is a bit of a computer whiz, with his own YouTube channel. But life is not easy, especially as Natalie is dealing with her own medical issue — a neurological condition similar to Parkinson’s.
Still she soldiers on, writing on her GoFundMe page as recently as Dec. 16: “I leave this week to go to Europe to beg them to start treatment ASAP.”
“I’m not worried about me — it’s Jaiden we’re going to get fixed,” Natalie said.