Hi! My name is Tessa, writing on behalf of my daughter Willow. Our journey started in 2022 (though I had suspected a familial disorder on her dad’s side prior due to shared medical issues between her father and grandmother). After being misdiagnosed and seeking a...
In 2024, our family learned that a genetic mutation had been quietly passed down through generations. The news came through a relative who had been tested, and once we understood what it meant, many of us began the process of getting tested ourselves. In September of...
Charley was born at 32 weeks weighing 2lbs 6oz. Although she was small, since the very beginning she has been determined. Requiring CPAP to help her breathe after birth, after 8 hours she decided enough was enough, ripped off the mask, and never needed it again. This...
Hi, my name is Gerald Wysoczynski Jr. I live in Dallas, Texas, and I was diagnosed with Dyskeratosis Congenita (DC), a Telomere Biology Disorder (TBD), at age 31. But my story began long before that. As a child, I experienced esophageal strictures, abnormal skin...
My son Max was born early and we thought that was going to be our biggest hurdle. Consistent low platelet levels lead us to being cared under Great Ormond Street Hospital in London. After months and months of checks and test we received the news that Max was diagnosed...
Although 11-year-old Cate has struggled with bone marrow failure all of her life, we only recently learned that she has very short telomeres. As a baby, Cate was transfusion dependent, and her doctors thought she might have Diamond Blackfan Anemia. Later, as...
