My beautiful daughter Genevieve was just diagnosed with a Telomere Biology Disorder with a DKC1 mutation. She is 2 years old. Obviously we are very new in this journey and hopefully have a long one ahead of us but we are very very thankful to have found Team Telomere....
Vincent was born in week 26 and weighed only 515 grams. We stayed in the hospital for 17 weeks until we were able to go home just before Christmas. After a couple of months, he started to get blood in his feces and he seemed to struggle when emptying his bowels. We...
Hello, my name is Mike and I have a rare disease. It is called Dyskeratosis Congenita (DC) and it runs in my family. My father and my uncle (his twin) had it, two of my 4 brothers have/had it, and 3 of my cousins have it. Of my two children, my daughter also has it....
Our board vice president, Nicole Bjerke, is proud to serve our community as it helped her as she grieved the loss of her cherished daughter, Rilee Bjerke. In honor of Rilee, Nicole shared a letter written by Rilee to the Make-A-Wish Foundation when she wished for a...
When our beautiful daughter Leia was first diagnosed with DC our whole world was turned upside down. We didn’t know what to do or what we were up against. Our hearts were broken and lives shattered. As parents we fight and work hard to ensure our children are safe,...
