OUR BELOVED JAIDEN IS TURNING TO STONE!!
Jaiden suffers from a rare and rapidly progressing connective tissue disorder called Stiff Skin Syndrome that turns his skin into stone! YES…STONE! He is the 41st documented case ever in the world, and the only active case in the world today, as far as the doctors know.
It all started when Tim and Natalie Rogers wanted to start a family of their own. When they discovered that wasn’t possible, both were undeterred. The Rogers felt there was room in their home and hearts for adopted children. Their first, a newborn daughter, was adopted from a broken home in 1989. Their second, a now 13 year-old boy, named Jaiden, was adopted back in 2005.
The Rogers entered Jaiden’s life not a moment too soon. After his birth mom signed over guardianship, Tim and Natalie found a little autistic boy with fetal alcohol syndrome, neglected and malnourished, huddled next to his filthy car seat. He was even once observed eating dog food out of a dog dish because he hadn’t been fed.
For the first year they had Jaiden, he used to sneak into the Rogers’ bedroom in the middle of the night and feel their faces to make sure they were still there, then go back to bed. What neither Jaiden, nor his new family could have known then, was the only thing more horrifying than the first chapter of Jaiden’s life would be the second chapter.
The trouble began innocently enough 7 years ago when Tim noticed a small lump on Jaiden’s right thigh just underneath his skin. He took Jaiden to a dermatologist who simply told them to keep an eye on it. The lump started getting bigger, and even more startling, it had started to spread….and fast!
The Rogers’ noted, “It was as if the skin on his right leg was 1/8th of an inch thick with something very hard underneath, like stone. It felt like you were tapping on a countertop.”
In a matter of weeks, the growth had wrapped around Jaiden’s right thigh and behind his knee. Once the hard calcifications invaded the joint, Jaiden began to lose mobility. The family rushed to Texas Tech Medical Center for a biopsy.
When the results came back, even the doctors couldn’t believe what they were seeing. Jaiden was diagnosed with something called Stiff Skin Syndrome. Stiff Skin Syndrome is a connective tissue disorder characterized by hard, thick skin, which can spread over the entire body, causing immobility. Muscles become weak, and the pain is unbearable!
Jaiden’s doctors acknowledged that they’d never heard ofsuch an aggressive spread of the syndrome. In a month, it spread to Jaiden’s left leg, both hips, buttocks, and his arms. Spots have recently appeared near his spine. The once-hyperactive Jaiden is often confined to a wheelchair and no longer able to attend school.
Every day the pain from the disorder grows worse. Jaiden understands that he is sick as much as a 13-year old boy can, although he cannot fully grasp the intent of the sinister syndrome branching out just beneath his skin.
Over the last few years, the fight back has begun. Jaiden has continual chemotherapy treatment to try to halt the spread of the calcifications. 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 cannot fend off due to his weakened immune system.
Jaiden has also started physical therapy. This is the most crucial component of his treatment. His muscles must be stretched to keep his joints limber. The stretching is immensely painful. Still, Jaiden smiles and jokes with his doctors and submits to pool therapy when he has one of his good days.
Jaiden takes 10 medications a day, including a chemo medication and 4 different heavy-duty pain medications.
Because there are so few recorded cases, there is no playbook as to how to treat it. As aggressive as Jaiden’s calcifications are growing it’s likely the disorder will spread until he experiences total paralysis or his chest wall collapses where he is unable to breathe. Left untreated, Jaiden will become entombed inside himself and die!
WE ARE RUNNING OUT OF TIME!
We have exhausted all help in the United States, costing the Rogers over $500,000 of their own retirement money and they also had to take out a 2nd mortgage on their house. Just recently, the family had to quickly pick up and move the family across the country to Georgia, as the high altitude in Colorado made breathing too difficult for Jaiden.
WHAT CAN YOU DO TO HELP?
The family is now left with one last hope for Jaiden, AND WE NEED YOUR HELP!! We need to get him to Europe to try a special stem cell treatment specifically for rare skin diseases. Without this treatment Jaiden’s skin will continue to harden and he will start to deteriorate and die. He is our whole world!
The cost of Jaiden’s treatment alone is $1,000,000. We have to find a way! Please consider helping with a donation (no amount too small) and sharing the story and website address (www.savingjaiden.com) amongst your social media channels to build awareness about Jaiden’s urgent journey! We appreciate all your support!
We have gotten questions about why this treatment is so expensive. One would think there are foundations for this sort of thing. You have to keep in mind that Jaiden is the only one in the world that we know of with this condition. There have only been 41 people in the whole world EVER to be diagnosed with Stiff Skin Syndrome. Medical companies don’t make a profit off of rare diseases. Therefore, money isn't being used to find a treatment for this condition. It is left up to the parents to pay this money to care for their children. So when you have to reach out for help on your own, it is VERY expensive.
JAIDEN IN THE NEWS
Jaiden has been profiled in People Magazine; featured on daytime TV shows, such as Dr Oz and The Doctors;Channel 5 News out of Colorado Springs; Channels 4, 9 and Fox News out of Denver; and also newspapers all over the world trying to help!
- Larry Newberry
- Juanito Alfonso
- Vernon Smithson