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,...
Jonah is a 7-year-old bundle of energy and enthusiasm who is challenged by short telomeres. Since birth, Jonah has struggled to meet standard milestones, especially in terms of language and psychomotor skills. An early diagnosis of pontocerebellar hypoplasia (PHC) was...
Dristin Franklin was born July 13, 2001, he was a happy child and was very active. He enjoyed playing soccer, football, riding bicycles and dirt bikes. He loved children and was so sweet and respectful to all young and old. When he was young, we just thought he had...
