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
‘So much has changed’: Advances in XLH care help siblings thrive
Learn more about our Skeletal Health Center. When Stephanie Capone was a child, she was diagnosed with X-linked hypophosphatemia (XLH), a rare genetic condition that makes bones weak, soft, and easy to fracture. XLH, which can be passed down through families, can lead to difficulty walking, bowlegs, short stature, and other challenges. “I underwent ... Read More about ‘So much has changed’: Advances in XLH care help siblings thrive
A rare injury, a more determined player: Adrian’s knee dislocation
Adrian can barely remember a time when he didn’t play football. Now 16, he grew up watching games with his father, Antron, who’d played for a top-tier college and practiced with the NFL. In addition to televised games, the two often traveled to Tennessee for football weekends with his father’s former teammates. “Football is a ... Read More about A rare injury, a more determined player: Adrian’s knee dislocation
A reunion of the heart: Grace and Amy bond through HLHS
At first glance, Grace and Amy have a pretty typical friendship: they joke around, cheer each other on, and keep in touch mostly through texts and FaceTime. But look a little deeper and there’s something extraordinary about their bond, or more specifically, how and where it began. Grace, 22, and Amy, 21, were both born ... Read More about A reunion of the heart: Grace and Amy bond through HLHS
How a meniscal transplant made me a Boston sports fan
I was in kindergarten when my knee started popping and cracking. My parents and I didn’t know it at the time, but I’d been born with discoid meniscus. The cartilage in my knee that was supposed to protect my shinbone and thighbone from rubbing together was misshapen and throwing my knee out of alignment.I had ... Read More about How a meniscal transplant made me a Boston sports fan
Finding the right team for achondroplasia: Jeremy’s story
As an “older” mom, Erica Johnson was used to undergoing more frequent screenings while pregnant with her second child, Jeremy. But when an ultrasound at 30 weeks revealed that his head appeared to be much larger than his legs, she raised a flag with her local obstetrics team. “They assured me that he’d catch up,” ... Read More about Finding the right team for achondroplasia: Jeremy’s story