Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 18 000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers.
Rohan's story with ALD:
He started as a normal, happy, friendly and loving boy. He started pigmentation at age 5 and was diagnosed for Addison’s disease. He has been on steroids since then. When he turned 24, he started showing signs of ALD/AMN. He couldn’t walk anymore and had lost his bladder control. By age 25, he was completely bedridden and is now paraplegic. But he still had a positive attitude and kept up with current things. Loves to read and play video games.
He has been in and out of the hospital. He had a hip bone fracture too, since his bones are now brittle.
2 weeks (September 24), 2 days after his 28th birthday, he caught some infection and got pneumonia. He has been on the ventilator in the ICU since then. It’s been a roller coaster ride since then. He’s been in and out of coma, infections. He is having difficulty breathing and coughing out his secretions etc. so we had to get a tracheostomy done. Because of the tube he has lost his ability to talk. He will also need a feeding tube.
We will need a team of doctors for his mental and physical health. He is currently residing in India.
The donations will be used to help with the medical expenses, doctors needed and provisions that will need to be done at home to help him rehabilitate.
We really appreciate the help. Thank you for your donations.
- Manish Chiniwalar
- Manish Chiniwalar
- Sangeeta Rao
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more