August 10, 2026 12:00am - November 4, 2026 12:00am
Why I Joined the Warrior Challenge
As some of you know, my Son Rafi was born with a genetic mutation known as SCN2A with deletions in exons 1 and 2. This was not inherited or picked up in any of our genetic tests during pregnancy. Rafi is turning 2 years old in a few days. Rafi has a movement disorder and is unable to walk or talk. He has an intellectual disability and finally received his autism level 3 diagnosis this week.
Aysar and I recently flew to Orlando to meet with researchers and other families impacted by this rare disease. There are however researchers working on finding a cure! If you can please help fund the research efforts in gene therapy for kids like Rafi and give them back a piece of themselves. Thank you for reading.
Love Rachel Ezzour