November 12, 2018, was the first time we heard the word cystinosis. Nick and his parents were in a pediatric kidney specialist’s office with 14-month-old Hayden, while Angela was at her first day of her new job, 1200 miles away. We can remember every detail of that day because that is when our new life truly began.

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 prepares you for reading a prognosis like this about your daughter, especially when we had only taken Hayden to see our pediatrician a few days earlier because she was really thirsty.

Since that day we’ve seen almost every doctor you could imagine and have become so fluent in medical terminology that doctors ask us if we have a background in medicine ourselves. We’ve had overnight stays in the ER due to a common stomach bug, a broken leg, a surgery to place a g-tube, and many days that seem to never end. We start early and end late with round-the-clock medications because, with cystinosis, there are no days off.

Despite all of that, Hayden wakes up happy and ready to tackle life every day. She loves going to school, going to the zoo, seeing her friends, and being outside in the snow. She’s the toughest, bravest, and most resilient person I know. Through all of the hospital stays and medications over the past year, the thing that stands out most to Hayden is her promotion to big sister.

We were so fortunate to come across the Cystinosis Research Foundation through our online searches and they have made a huge impact on our lives. Now we have a community of families battling the same daily struggles. People to reach out to for advice or just to speak with after a hard day. Others have sacrificed their very well-being to clinical trials in hopes of finding a better quality of life for everyone in the community. When you donate to the Cystinosis Research Foundation, every dollar is spent on research for better treatments, and potentially, a cure. A gene therapy trial was recently performed in the fall of 2019, which could not have been accomplished without everything the CRF has done and will continue to do, for families like ours.

We are thankful for each and every one of you that believes in us and Hayden. Because of you and the Cystinosis Research Foundation we have so much to look forward to. Thank you for choosing to be a part of our journey.

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