Thriving — not just surviving — as an adult with esophageal atresia
Willa Barnett has a story to tell — and it’s a big one. At 26, she’s experienced a slew of serious health challenges since she was born with VACTERL association. In this group of growth anomalies, certain parts of the body don’t form properly during fetal development. This can lead to problems with the vertebrae, ... Read More about Thriving — not just surviving — as an adult with esophageal atresia
Hope in a new home: A family’s journey with HHT
When Yeiden Pérez Camacho imagines the future, he sees himself on a basketball court. At 13, he’s already an award-winning athlete in several sports, including basketball, volleyball, tennis, and table tennis. His 8-year-old sister, Adienee “Adi” Pérez Camacho, is a budding gymnast who loves cooking and crafting with her family. Yeiden and Adi grew up ... Read More about Hope in a new home: A family’s journey with HHT
Rh alloimmunization: A family’s experience across two pregnancies
After her second child was born 14 years ago, Erin was convinced she’d never have another baby. Not because of her age or because she didn’t want to grow her family, but because of the painful prenatal experience that had stayed with her for years. Erin had developed alloimmunization, a condition in which the immune ... Read More about Rh alloimmunization: A family’s experience across two pregnancies
The only way through it: How Sebastian learned to manage chronic pain
Sebastian Sachs is passionate about theater production and team sports, two unrelated activities that have a lot in common. Both require a dedicated group of people working toward one common goal — something that could also be said about Sebastian’s experience learning how to manage chronic pain. “It felt like I was on a medical ... Read More about The only way through it: How Sebastian learned to manage chronic pain
Stay chill, show up, move forward: Nolan’s journey with ITP
At 18 years old, Nolan Ryan is an all-around athlete. Between basketball, football, and lacrosse, sports have shaped his daily life for years. He’s a true team player who shows up to every game with humility and dedication, whether he’s on the field or sitting on the sidelines. Like most student-athletes, Nolan had to balance ... Read More about Stay chill, show up, move forward: Nolan’s journey with ITP
Small gains with big meaning: Loic’s story of deep brain stimulation for PKAN care
Loic, 5, lives in Montana with his parents, Sherine and Mark, and his sister, Selah. He loves Spider-Man, sushi, and the Fourth of July. He laughs easily, sings along to his favorite shows, and is a big flirt. These are the little things that Sherine says make Loic, Loic, and which, until earlier this year, ... Read More about Small gains with big meaning: Loic’s story of deep brain stimulation for PKAN care