Hayden was diagnosed with infantile nephropathic cystinosis on November 28, 2018, when she was 14 months old. Over the past several months, we’ve been overwhelmed by grief – but we’ve also been lifted up by kindness, love, and support from our community, family and friends.
In the days that followed a visit to the pediatric nephrologist, where we first heard the word “cystinosis,” we scoured the internet and Facebook for information. We were desperate to find anything that proved the nephrologist wrong – something that would let us go back to the days before we knew about this disease. Instead, we found a community of people describing experiences that were too familiar for us to ignore, talking about a reality that would soon become our own.
In those first few weeks, we were careful about how much we let ourselves read, as it was too much to bear in the middle of the night when sleep was nowhere to be found. And frankly, we still worry about Hayden’s future today. But something else happened in those first few weeks that made it easier to face our new normal – and that was the multitude of kind messages coming through on Facebook from families that were like ours, offering words of comfort and reassurance that things would get better.
When we shared our story with our network of family and friends on Facebook, we were blown away by the outpouring of support. We were so thankful to have connected with Nancy Stack and the Cystinosis Research Foundation, so we could direct people’s financial support toward an organization that is working so tirelessly to find a cure.
Our community has donated more than $34,000 to the CRF in 3 months, and we’re earnestly planning more events this spring. In April, Nick’s alma mater, Fort Lewis College, is holding a goal-a-thon with the men’s soccer team. And during the month of May, a relative is donating 5% of the profits from her small business in Hayden’s name to the CRF. Many others have also offered support, and we plan on having more events to help spread awareness and raise funds throughout the year.
We’re still learning about life with cystinosis, and not all days are easier than the ones that came before. But we have found that we’re getting stronger, and what makes it possible to face each day is Hayden and her big, infectious personality. She’s eager to greet anyone that meets her eye, and has never met a dog she doesn’t like. Hayden is our daily reminder of what it means to be resilient and strong, and to have a love for life.
The hard work and determination from so many people has given us so much hope for a cure, and for that we will always be grateful. We look forward to the day when Hayden will be able to speak about the disease she had as a kid that no longer impacts her daily life.