November 12, 2018, was the first time we heard the word cystinosis. It was in the office of a pediatric nephrologist. Hayden was 14 months old, and the only symptom that triggered us to see a doctor was her thirst.

When you Google cystinosis, you’ll read a list of vital organs and tissues that can be damaged, and see words like “progressively fatal” and “lifespan of less than 10 years” before you scan to the next part that tells you it’s now treatable with drug therapies, extending the life expectancy into adulthood. Nothing could have prepared us for reading a prognosis like this about our daughter.

Since that day, Hayen has seen countless specialists, undergone surgery to place a G-tube to administer life-saving medications, and had overnight stays in the ER due to a common stomach bug. We’ve experimented with schedules, medications, and nutrition to control nausea and vomiting. We’ve established a rhythm and routine that now feels normal.

Through all of this, Hayden has shown resilience, bravery, and fortitude. She wakes up every day hoping it’s a school day. She loves exploring outside, trying new activities, and being in the water. She thrives in gymnastics, dance parties, all while being a Harry Potter fanatic. She knows about her disease and advocates for her needs. Hayden is learning how to swallow pills, and thinking about a day in the future when she won’t need a G-tube. We are hopeful for a day when she also won’t need to manage cystinosis.

We are so fortunate to have the support of the Cystinosis Research Foundation – because of the CRF, we have a gene therapy trial underway and additional research informing alternative therapies. Most importantly, we have a community of families that have become a critical support network as we navigate through new phases in life.

When you donate to the Cystinosis Research Foundation, every dollar is spent on research for better treatments and what we hope will be a cure. We are thankful for every one of you who believes in, and helps us work toward, a better future for Hayden. Thank you for choosing to be part of our journey.

With grateful hearts,
Angela and Nick, and Hayden and Finley