Hamish Crowe
Gene: TINF2

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 Queensland Children’s...

Read More

Kyndall Sewing
Gene: Unknown

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 a bone marrow biopsy...

Read More

Skylar Grossberg
Gene: TERC

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 diagnosis of dyskeratosis...

Read More