14-year-old Colorado boy with a rare disease that turns him to stone asks for help with his treatment

colorado boy rare disease help stiff-skin syndrome

By Fatima Virrey , Parent Herald Jul 11, 05:13 am

After seven years of battling against a rare disease, Jaiden Rogers is under worse conditions. This time, the 14-year-old boy would like to go to Europe to get the cure for his disease.

When Jaiden was seven years old, he was diagnosed with stiff-skin syndrome. This syndrome causes Jaiden to stone.

Since he was ten years old, his parents have been going to different organizations that could help in financing his treatment that is available in Europe.

What has the stiff-skin syndrome done to the 14-year-old colorado boy?

When Jaiden was initially diagnosed with the stiff-skin syndrome, he only had a small patch; then, it spread all over his body. His father shared, "It's almost like if you took your finger and tapped on his arm, it's almost like tapping on a countertop, on a hard surface."

When Jaiden was ten years old, he was already on oxygen support.

Now that he is 14 years old, things have become a little tougher for the Colorado boy. Aside from having difficulty in breathing, Jaiden has also developed an infection.

Every day, Jaiden takes ten types of medicines for his rare disease, which include chemo medication.

A lot of doctors have seen Jaiden, but because there are very few recorded cases of this rare disease, there is very limited knowledge on how to treat this disease. There are only 40 other known cases of stiff-skin syndrome.

The last hope of the family is the procedure that could be done in Europe.

The expense of the treatment

Since 2016, the Rogers family has been eyeing to bring Jaiden to Europe for the cure for his rare disease. However, the expense of going there and paying for the medical bills is something that the family cannot afford.

The treatment itself will cost more than $1,000,000. Transporting Jaiden in his condition now will also cost the family a fortune, at $125,000. That is why they badly need help.

The Colorado boy's plea for help

Since 2018, a GoFundMe page has been put up by the Rogers family. It aims to collect 1.5 million dollars, and they are only at the $340,000 mark.

According to the Rogers family's friend, Maria Rivelli, "The doctors in Europe told Tim and Natalie that Jaiden needs to get to Europe NOW! He is suffocating slowly."

Jaiden, in the May 27, 2020 update of the GoFundMe page for his treatment, shared how he's going through the rare disease.

He tried to put into words his struggles. In his letter, he said, "You can't move for an itch, to wipe your tears, blow your nose or even go to the bathroom by yourself. It is so painful!"

Jaiden's only wish now is for him to live. That is why he has been joining his parents by asking for help from everyone. He understands that while his will to live is strong, he is fighting against time.

For those interested in extending the life of this 14-year-old Colorado boy, you may go directly to his GoFundMe page to send your help.