She and her two sons have a very rare disease. Together, they are three of 30 known cases in the world.
Professionally, Neena is a college English instructor pursuing a doctorate in educational leadership. Personally, she is a wife, mother, and rare disease advocate. She is one of only 30 people in the world with her particular condition – Jansen’s metaphyseal chondrodysplasia – which is the cause of her short stature, and medically means that her bones disappear faster than they develop.
For years, 32 to be exact, Neena lived with a misdiagnosis. The disorder doctors claimed she had wasn’t genetic, so when she asked if she could safely start a family, they said yes. Just like that, Neena was expecting her first son, Arshaan. For a few years, Neena, her husband, and little Arshaan were a typical family living in Dubai. They decided to expand their family by one and another boy – Jahaan – came into the world. But it was at this time that Neena began to notice things about Arshaan and her fear was realized: she had passed on her condition to her two boys.
How was this possible? Her doctors said it wasn’t. That’s when Neena was re-diagnosed, correctly this time, with Jansen’s. It’s a disorder with no cure…yet.
Neena began to research Jansen’s and found a doctor in Minnesota who wanted to treat and study Arshaan and Jahaan. Through bone biopsies, there is a chance they could find a cure for the disease. The family moved from Dubai to Wisconsin to be closer to the treatments that could change not only the boys’ lives but the lives of everyone who has this condition. Though the number of people affected by Jansen’s is low, doctors believe that a cure for Jansen’s might also mean a cure for other bone conditions, including osteoporosis.
Neena, Arshaan, and Jahaan all use wheelchairs. Breaking them all down to make their frequent trips to the hospital was becoming impossible. With their BraunAbility van, they can all fit in the vehicle and strap down in their chairs – no wheelchair breakdown required. Less time getting in and out of the car means the boys have more time to just be boys, playing with their superhero action figures, coloring pictures of their family, and bouncing around from one end of the house to another.