There are five people in the United States that live with Jansen’s Metaphyseal Chondrodysplasia. Neena Nizar and her two sons, Arshaan and Jahan, account for three of the five confirmed cases.
The rare disease causes the bones in the body to bend. As new bone forms, the same problem occurs.
“So why am I so passionate about driving for a cure? People say you should just accept things the way they are and love your children,” Nizar said. “I do love my children. I love my children tremendously.
“But I also know what its like to have pain everyday. To not be able to climb up stairs or not be included in certain areas because your feet hurt or your body aches. I do know what it’s like.”