Sofie was born on the 4th of July which is perfect because she treats every day like a celebration. She routinely invites strangers home for events we didn’t know we were hosting. Our days are filled with tea parties, dance parties, and birthday parties. Every outing is an opportunity for an adventure. Grocery store clerks are persuaded to play hide-and-seek. Baristas are bullied into peek-a-boo. My husband Matt and I often look at each other incredulously and say, “this kid LOVES life.” I have never met anyone who lives every day with such joy. 

The first sign that something was wrong was around 6 months when she stopped growing. After a prolonged medical mystery tour, Sofie was diagnosed with cystinosis. The months that followed were terrifying as we worked to begin treatment, gain weight, and stabilize her health. Now, three years into her diagnosis, those early days are a distant memory. We look at Sofie and marvel at her resilience, and how much she’s growing and changing every day. She is a living example of one of our newly forged family mottos: life may be more complex, but it is no less beautiful.

As parents, your most important job is to love and protect your children. When Sofie was diagnosed, we made a commitment that we would marshall our resources, organize our friends and family, and do everything in our power to ensure that Sofie has a long life free of this devastating disease. This is why we’re launching Team Sofie this November. And thanks to the incredible work and generosity of the Cystinosis Research Foundation, that future may be closer than we ever imagined.

Thank you to everyone who has lifted us up, cheered us on, and shown up for our family in person and from afar. We are so grateful that you are part of our journey.

With love,
Erin, Matt, and Sofie