Those who have been impacted by Dyskeratosis Congenita/Telomere Biology Disorders have a beautiful story to share. We want to hear your story and we want others to hear it too. We encourage you to use this forum to share your experiences, with the hope that it will offer encouragement to those who read it, and provide a way for families to connect and support one another. Team Telomere will also honor these stories through social media and printed materials. This forum is not intended as a vehicle for promoting other charities or personal causes. Therefore we ask that your submissions not include solicitations for donations or promotions of any kind. We reserve the right to edit content deemed inappropriate in this regard.
Share Your Story
Genevieve Schmidt
Gene: DKC1
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 Bergenblad
Gene: DKC1
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...
Mike Huiras
Gene: TINF2
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....
Remembering Rilee Bjerke
Gene: TINF2
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...
Leia Fallico
Gene: TINF2
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 Neufeld
Gene: PARN
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...
Remembering Dristin Franklin
Gene: Unknown
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...
Remembering Dominic Coffey
Gene: DKC1
Dominic aged 33 was the most gentle soul you could ever meet and to those lucky enough to be in his life were truly blessed with the love and support he gave them while fighting his own battle daily. I know I speak for all my family when I say he truly was the bravest...
Remembering Chad Carson
Gene: RTEL1
My husband, Chad, was a super healthy person who suddenly became super sick. Although we had known for a decade that Chad’s liver was deteriorating for mysterious reasons, he still felt well enough to bike to work every day and travel the world with me and our...
Send Us Your Story
Each community member who shares their story retains full ownership of it. You have the right to edit your story or request its removal at any time, ensuring that you remain in control of how your experiences are shared. We want to honor your voice and ensure you feel comfortable with how your story is presented.