Dear Family and Friends, 
When our daughter Zoé was 6 months old, she suddenly became very ill. Her pediatrician initially suspected a virus, but her condition worsened quickly. After several emergency room  visits and days of severe vomiting, we were admitted to the hospital. A few days later, we received a diagnosis we had never heard before—nephropathic Fanconi cystinosis—a rare and serious genetic disorder.

The news was devastating. We spent five long weeks in the hospital while Zoé received treatment, including an NG tube and later a G-tube. It was an incredibly difficult time, but we were carried by the support of an amazing medical team, other families, and the Cystinosis Research Foundation (CRF).

Attending the CRF’s Day of Hope in California was a turning point for us. We were deeply moved by the passion and transparency of this community. We now feel stronger—and ready to give back. We’re committed to raising awareness and supporting research that brings us closer to a cure.

With love,
The Goulet Family
Bianca, Jonathan, Noah, and Zoé