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. 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.
On the 23rd of December 2020 my life changed forever when my mother's heart stopped beating. At only 58 we were robbed of so many years together, we had so much to look forward to. Spending time with her grandkids, cruises with her husband - her favorite thing to do...
Alexander Jamie Black is a warrior. He is an amazing husband and father of 6 children. In 2016, when his youngest was only 12 months old, he was diagnosed with Aplastic Anemia. He became transfusion dependent and his life changed forever. He always kept positive about...
Hamish was diagnosed with Dyskeratosis Congenita (more specifically Hoyeraal-Hreidarsson Syndrome) at 2 years old following almost 18 months of testing to determine the reason behind his critically low blood counts. Just 4 months after diagnosis, he was admitted in to...
In June of 2019, at 5 years old, we took Kyndall to her pediatrician because she was covered from head to toe in bruises and petechia. Her bloodwork showed critically low platelets and white blood cells so we were immediately sent to Omaha Children's Hospital. She had...
For generations, my family has suffered from illnesses associated with telomeres disorders. Since the rare TERC gene is a recent discovery, the cause of my family’s consistency with terminal illnesses was unknown for a long time. My father was the first to receive a...
Josh Friedman was born on June 24, 1994 and passed away on November 18, 2011. In between he made countless friends, was a Best Buddy at Unionville HS, an actor in multiple productions including his famous role of Tiny Tim in a Christmas Carol, was a camper at...
Ruthie is 20 months old. She has recently been diagnosed with DC. More specifically, she has Revesz syndrome. She has many things that led us to this diagnosis. An esophageal stenosis, ataxic movement, balance issues, calcifications on her brain, etc. We are in the...
Gabby is a spunky kid living in New Zealand with her mum and dad, Megan and Andrew, and her older sister and brother, Ruby and Lachlan. Gabby's first trip to hospital was in November 2014 at the age of 4, following a blood test that showed blood counts were all rock...
Where do I begin to describe my Alex? He was such an old soul filled with so much knowledge and love. Alex endured more in his sixteen years than most do in a lifetime, every medical obstacle was tackled with a smile and a pragmatic approach. Alexs main goal in life...
Although he never grew very tall, Peter Ramesh Futia lived large. Born with several genetic mutations, including the one on RTEL1 that caused his Dyskeratosis Congenita, he never let his challenges slow him down. Peter was diagnosed with DC at age 16 and enjoyed seven...