Remembering Alexander Jamie Black
Gene: Unknown

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 his treatment and wanted to...

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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...

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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...

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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...

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Remembering Josh Friedman
Gene: DKC1

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 Bournelyf Special Camp, played...

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