Gabby Stephens
Gene: TINF2

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 bottom. We took her to...

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Remembering Alexander Pinto
Gene: TINF2

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 was to help others suffering...

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Remembering Peter Futia
Gene: RTEL1

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 years of relative stability...

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Dwayne & Darrell Soto
Gene: DCK1

My name is Brigitte N. Padin Feliciano and I’m from Puerto Rico. I have two sons: Dwayne Soto (8 years old), and Darrell Soto (4 years old). Since 3 years ago, my eldest son (Dwayne) began to have nails atrophy, oral leukoplakia and a little pigmentation in his ears. This led us to go from...

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Grayson Little
Gene: TERT

Grayson Little is 2 years old, diagnosed with Hoyeraal-Hreidarsson Syndrome/ Dyskeratosis Congenita. He carries two TERT gene mutations, inherited from each of his parents, Rachel and Leighton, and has Telomere lengths <1%tile.  Grayson first experienced symptoms of bone marrow failure at 8...

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Megan Colter
Gene: TERT

In 2015 our daughter, Megan, was diagnosed with moderate Aplastic Anemia, bone marrow failure at the age of 13. As part of that diagnosis process, she had extensive testing to try and determine the cause. That process included telomere length testing. We were told she had very short telomeres...

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Dine, Dance, & Donate Previous Honorees

Team Telomere’s Honorees for 2019 Excellence in Medicine: Dr. Suneet Agarwal, Boston Children’s Excellence in Community: Lisa Helms-Guba, Maryland Executive Director’s Choice: Dena Paffas, Pennsylvania and Sonia Bhala, New Jersey Team Telomere’s Honorees for 2018 Excellence...

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Kaitlin Dillon
Gene: RTEL1

Kaitlin, age 20, was diagnosed with aplastic anemia in 2005 at the age of 7. Before that she had significant developmental delay. The diagnosis of Dyskeratosis Congenita took two more years and a trip to the NIH to join the Inherited Bone Marrow Failure Study. Kaitlin received an unrelated stem...

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The Roskell Family
Gene: TINF2

Jacquie Roskell is a new member of the DCO Community. Jacquie lives in Lancashire, UK with her husband Shaun and their two gorgeous children Woody (7) and Phoebe (5) – oh, and their beloved lab Denzel, too! In May 2017 their lives were turned upside down when Phoebe (then 4) became unwell....

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Becky and Jesse
Gene: Unidentified

Hello. My name is Becky and I have a 6-year-old son names Jesse. We were told in 2005 that he had DC. The signs started when he was about 1 ½ . We are from a really small town and no one here had answers to questions. We had a sick child and no doctor could find out what was wrong. We finally got...

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