On December 29th, 2014 we were blessed with the most amazing little boy, Aarav Khalasi. He quickly began growing and hitting his milestones as most babies do. At about 9 months of age, we began noticing his lack of interest in food and difficulty with eating solid foods. At the same time, we noticed he wasn’t gaining weight nor did he have any interest in standing or wanting to walk.

We addressed these concerns with his pediatrician during his one-year checkup appointment. The doctor ordered a series of lab tests and blood was drawn on the same day. The next day we were asked to come back in to have the same lab tests redone. Aarav’s electrolytes were extremely low and we needed to have him admitted into the hospital right away.

On our first night in the hospital, his attending physician told us they suspected he may have cystinosis. Our hearts were broken as we began to learn more and were not ready to accept it. As the days went by, new medications were added, and countless labs were drawn to help level his electrolytes and bicarbonate. After one month of being in the hospital, on February 10th, 2016, the final results came, and our son was officially diagnosed with cystinosis.  Cystinosis is a rare disease that only affects 2,000 people in the world.  This disease slowly destroys organs in the body, including the kidneys, liver, eyes, muscles, and brain.

You can help by making a contribution to fund critical cystinosis research and join us in our quest for the cure! 

Thank you!

The Khalasi Family,
Minaxi, Mukund, Aarav, Isha and Rani