Child Is Turned "to Stone" By A Rare Disease

2024 Author: Steven Freeman | [email protected]. Last modified: 2023-12-17 08:15

Parents of a 12-year-old boy from Colorado with Rigid Skin Syndrome, a rare condition that quickly degenerates tissue and causes skin to become stone-hard, fight against the clock to find a cure for the disease. your son.

Alamosa's Jaiden Rogers was first diagnosed in 2013 after his father Tim discovered a hard lump on his right thigh. The rare disorder makes the muscles difficult to move.

As of 2015, only 42 people in the world had been diagnosed with this syndrome, and currently "there are no specific therapies available to reverse symptoms," according to the US Department of Health and Human Services.

"We were so confused at first," Tim told People magazine about his son's diagnosis. “We could not believe that there were no answers because it is very rare. We couldn't find anyone else who had it.”

The disease has spread from the child's thighs to the hips, stomach, and back, and is moving towards his chest, causing pain.

Rigid skin syndrome is not fatal in itself, but hardened skin could make Jaiden unable to breathe anymore, People magazine explained. "Her skin is basically like stone," said Jaiden's mother Natalie. "It is like touching the surface of a stove."

While Jaiden's doctors are currently seeking a cure, he is being treated with chemotherapy and strong pain relievers to help alleviate symptoms.

But the medical bills are expensive, and Jaiden's parents need help. They have to make monthly trips to Children's Hospital Colorado in Denver, which is four hours away, for the little boy to meet with his doctors.

Also, experimental procedures that could help Jaiden have high-priced labels, such as a new stem cell treatment in Europe that targets rare skin conditions but costs more than $ 1 million, according to People.

"The money is on the way." We just want our child to live,”said Natalie. “We have taken three mortgages from our home and have spent Tim's retirement. There is nothing more we can do."

Tim and Natalie have started a GoFundMe page with a goal of raising $ 1.5 million to help pay for Jaiden's treatments and cover the cost of medical bills.