Friends For Life

What a wonderful trip Mommy, Daddy and I took this summer!  We spent a long weekend in Woodstock, NY with my BFF Charlotte and her mommy and daddy, Megan and Michael.  Charlotte has cystinosis just like me and is only a few weeks younger than me.  We are so lucky to have each other to take this journey together.  We learned so much from each other in those few days, and our parents bonded and understood each other in a way that only other parents of kids like me can understand.  We will have each other to call, vent, laugh and cry to.  Even though we live several hours apart (that's what happens with a rare disease!) we will get to see each other every year at the CRF's Day of Hope and at our annual family vacation.  Love you Charlotte!