IF YOU CAN DONATE AIR MILES OR HOTEL POINTS ,
UNITED MILAGE PLUS ACCOUNT: CF695659
BEST WESTERN REWARDS NUMBER: 600663 7469595078
(mailto:TUNDRA81101@GMAIL.COM)Jaiden suffers from a rare and rapidly progressing connective tissue disorder called Stiff Skin Syndrome, that turns his skin hard like stone.
Tim and Natalie Rogers always wanted to have children 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. The second, a 12 year-old Russian boy adopted in2005.
The Rogers entered Jaiden’s life not a moment too soon. After his birth mom signed over guardianship, Tim and Natalie were finally directed to remote residence in Georgia. When they walked in ‘the smell was overwhelming.’ They found a little 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 Roger’s 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 6 years ago when Tim noticed a small lump on Jaiden’s right thigh just underneath his skin. He took Jaiden to a dermatologist who told them to keep an eye on it. The lump started getting bigger. Even more startling, the lump had started to spread…. fast.
“It was as if the skin on his right leg was an 1/8 of an inch thick with something very hard underneath, like stone. It felt like 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. Jaiden is the 41st documented case ever in the world, and the only one in the world righ now, as far as we know.
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 seen such 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 with his friends.
Every day the pain from the disorder grows worse. Jaiden is the first to point out new, hard spots of skin. Jaiden understands that he is sick as much as a 12 year old boy can, although he cannot fully grasp the intent of the sinister syndrome branching out just beneath his skin.
JAIDEN IS SLOWLY TURNING TO STONE!
Over the last few years, the fight back has begun. Jaiden’s treatment started with rounds of chemotherapy 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 would not be able to 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. Jaiden submits to therapy 3 times/week. Ideally, he should be in therapy 6 times per week but the co-pays are too costly for the Rogers family.
Because there are so few recorded cases, nobody knows what the worst case scenario is here. As aggressive as Jaiden’s calcifications are spreading it’s likely the disorder will spread until Jaiden experiences total paralysis. Jaiden will become entombed inside himself. Jaiden takes 10 medications a day including a chemo medication and 4 different heavy duty pain medications.
WE CAN NOT ALLOW THIS TO HAPPEN!
Jaiden’s stiff skin has now started to restrict his lungs and he now requires oxygen and a resperator to help him breathe . As his chemo continues to help slow the progression of his stiff skin, it is starting to spread at a faster rate. We have exhausted all help in the United States, costing the Rogers over $500,000 of there own retirement money and they have also mortgaged their house. We are now left with one last hope for Jaiden , AND WE NEED YOUR HELP. We absolutely 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 and he will start to deteriorate. We are unsure about what will start happening to his other organs. THE COST OF THIS TREATMENT AND THE COST TO STAY INEUROPE FOR A YEAR WILL COST ROUGHLY $1.5 million. The Rogers are asking people to donate what they can. WE CAN NOT DO THIS WITHOUT ALL OF YOUR HELP!! IIF WE CANT RAISE THE MONEY TO SAVE JAIDEN , WE ARE LEFT WITH NOTHING TO DO FOR HIM.. We are also asking if you have hotel points or flyer points that you are willing to donate, please let them know.
Jaiden is a survivor. The first two years of his life he endured hardships no child should suffer. The lasting effects of which are imprinted so deeply he would sneak into his new family’s bedroom just to make sure somebody was there. Today, we’re all there for Jaiden.
Jaiden has been seen on the daytime tv The Doctors, Goog morning America, 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 find a cure.
The Rogers are currently working with Dr. Elizabeth Swanson with Childrens Hospital and Dr. Hal Dietz at John Hopkins University, Baltimore.https://people.com/human-interest/12-year-old-boy-disease-stone-entombed-within-himself/