‘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
Hard and beautiful at the same time: Five lessons of raising a medically complex child
When they learned they were expecting a baby, Michelle and Stephen Strickland were delighted. The South Carolina couple looked forward to their child’s first words, first steps, and first family vacation. “You have this vision of a perfect life,” says Stephen. But when Aubree was born with a rare and complex condition, the couple entered ... Read More about Hard and beautiful at the same time: Five lessons of raising a medically complex child
The ‘Trach Chapter’: Isabella’s journey with bronchopulmonary dysplasia
Isabella’s life has been anything but ordinary. Born at just 27 weeks gestation and weighing only 1 pound, 4 ounces, Isabella has faced uncertainty from the very start. But as her parents, Hrach and Kimberly, will tell you, she’s conquered every challenge life has thrown her way. And in spite of her bronchopulmonary dysplasia (BPD) ... Read More about The ‘Trach Chapter’: Isabella’s journey with bronchopulmonary dysplasia
‘Challenge accepted’: Sophia takes on a brain tumor
In 2023, Sophia Mordini landed the role of a lifetime. A competitive dancer, the 12-year-old would play Clara in her company’s production of “The Nutcracker.” But the performance was bittersweet: Just two weeks after the curtain fell that December, she underwent surgery to remove a very large and complex brain tumor. ‘We knew something was ... Read More about ‘Challenge accepted’: Sophia takes on a brain tumor
Promising advances in fetal therapy for vein of Galen malformation
In 2024, Megan Ingram* of California and her husband were preparing for the birth of their third child when a 34-week ultrasound revealed a potential complication. Their obstetrics team suspected a vein of Galen malformation (VOGM) — a rare vascular condition involving significantly elevated blood flow to the head because of direct connections between arteries ... Read More about Promising advances in fetal therapy for vein of Galen malformation
A true hero’s journey: How a team approach helped Wolfie overcome pancreatitis
Wolfgang, affectionately known as “Wolfie,” is a bright and energetic 7-year-old with a quick wit and a love for making others smile. He keeps his mom, Cara, his older sister, Cadence, and his dad, Jameson, laughing with his playful humor. Behind the laughter and love, Wolfie and his family have been navigating a difficult medical ... Read More about A true hero’s journey: How a team approach helped Wolfie overcome pancreatitis