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 Russian orphanage in 1989. The second, a 12 year-old boy, was adopted in 2005.
The two children excelled. Their daughter is working on her masters in psychology. Their son, a computer science major, will graduate in 2015 as a commissioned officer in the Air Force. With both children soaring off to make their own marks, the Rogers felt they had room for one more. In 2007 they took guardianship of a 2 year-old boy named Jaiden.
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 a 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 eating dog food out of the dog dish.
Natalie told me that 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 was that the only thing more horrifying than the first chapter of Jaiden’s life would be the second.
The trouble began innocently enough 3 years ago when Tim noticed a small lump on Jaiden’s right thigh just beneath his skin. He took Jaiden to a dermatologist who told them to keep an eye on it. Things were fine until early this year when the lump started getting bigger. Even more startling, the lump had started to spread…fast.
Tim told me “It was as if the skin on his right leg was only 1/8 of an inch thick with something very hard underneath, like stone. It felt like tapping on 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 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.
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, short stature is common, and there is no known cure.
Jaiden’s doctors acknowledged that, of the known cases, 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 mostly confined to a wheelchair and no longer able to attend school with his friends.
Everyday 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 7 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 into stone.
Over the last few months, 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 sleep to prevent bugs.
Jaiden has also started physical therapy, the most crucial component of his treatment. His muscles must be stretched to keep his joints limber. The stretching is immensely painful, yet still Jaiden smiles and jokes with his doctors. Jaiden submits to therapy 3 times per week. Ideally, he should be in therapy 6 times per week but the insurance co-pays are too costly for the Rogers family.
Here’s a look at a day in the life of Jaiden. You can find out how we can help to stop the spread of Stiff Skin Syndrome below.
And you can donate right here.
UPDATE: Off and running passing $10,000!
UPDATE #2: $20,000 coming in fast
UPDATE #3: $25,000 in an hour flat. Let’s do this!
UPDATE #4: $30,000
UPDATE #5: $40,000 – past the halfway point! This is where the Chivers traditionally lay the hammer down…
UPDATE #7: Just jumpled to $60,000. Holy shit, hitting the throttle when it matters.
UPDATE #8: $70,000. The home stretch…
UPDATE #9: $80,000!!! You’ve done it again!!!
FINAL UPDATE: Just for good measure, $84,000.