Patient Stories
‘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
Research
Mapping ‘neighborhoods’ in aggressive childhood brain tumors
The third-most common kind of childhood brain tumor, supratentorial ependymoma, is an aggressive cancer that often returns after surgery and radiation therapy. By learning more about the makeup of these tumors, Boston Children’s researchers hope to better understand how to treat them and prevent recurrence. In a new study published in Nature, and led by ... Read More about Mapping ‘neighborhoods’ in aggressive childhood brain tumors
Research
Gene therapy for hearing loss: Tag-teaming from the lab to the clinic
Two-year-old Miles is one of the first patients with hereditary hearing loss to receive gene therapy at Boston Children’s Hospital — to striking effect. In May 2025, Miles received an injection delivering a healthy copy of a gene called OTOF into the cochlea of his inner ear. Now, Miles is thriving. He’s had no adverse ... Read More about Gene therapy for hearing loss: Tag-teaming from the lab to the clinic
Patient Stories
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
Patient Stories
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
Research
First-of-its-kind pressurization test could improve Ross procedure outcomes
The Ross procedure is a preferred surgery to treat severe aortic valve disease. The procedure replaces the failing valve with a patient’s own pulmonary valve. It’s an effective treatment option, but some patients have had complications. After surgery, the root of their aortic valve — where the valve connects with the heart — enlarges and causes ... Read More about First-of-its-kind pressurization test could improve Ross procedure outcomes
Patient Stories
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
Patient Stories
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
Patient Stories
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
Patient Stories
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