Our journey with cystinosis began when Aarav was just 13 months old. Now 10 years old, Aarav has faced this rare disease with incredible strength and resilience. Over the years, we’ve moved through many phases, each bringing new challenges, changes, and growth.

Living with cystinosis means constantly adapting. Routine labs lead to medication adjustments, and as Aarav grows, so do his needs. Medications, syringes, doctor visits, and lab work have become part of our everyday life. What once felt overwhelming is now our normal. 

Aarav currently takes more than 10 medications and regularly sees a team of specialists who, over the years, have become like family. They know his favorite snacks, his quirks, and the way he lights up a room. We’re also blessed with a strong support system of family and friends who help us stay grounded and hopeful. 

The truth is, Cystinosis is tough but so is Aarav. He faces each day with bravery and optimism. His strength often makes us forget how much he endures, because he embraces life with such joy and courage. We know that as he gets older, there will be more hurdles but we try to stay as hopeful as he is. That hope fuels our strength.

We’re incredibly grateful for the progress made by the Cystinosis Research Foundation. Advancements in treatments, research, and clinical trials have given us a real sense of hope for Aarav’s future. The road ahead may be uncertain, but it’s filled with possibility.

We might be biased, but to us, Aarav is a hero and our brightest light. 

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