Helping Jasmine manage Sturge-Weber syndrome before symptoms start
Sturge-Weber syndrome is a rare neurovascular disorder that increases the risk of seizures in infants due to abnormal blood vessel development in the brain. Almost 90 percent of children with Sturge-Weber experience their first seizure before age 2, which makes proactive, seizure-preventive care important in minimizing the risk of long-term brain injury. Finding such care, ... Read More about Helping Jasmine manage Sturge-Weber syndrome before symptoms start
A partner through amniotic band syndrome: Jace’s story
Jace is a happy, energetic 9-month-old whose big brown eyes light up a room. He’s adored by his parents, Kait and Evan, who not only delight in being first-time parents but are also incredibly appreciative of the care that helped save their son. It was care that took a village, Kait and Evan say — ... Read More about A partner through amniotic band syndrome: Jace’s story
Whether she’s embracing school, sports, or music, Lindsey shows how Williams syndrome can be managed
One of the first things Lindsey Franco will tell you is, “I like being me. I like being happy.” The 19-year-old has a lot to be happy about. She attends a post-high school transition program that helps young adults expand their social and life skills. There, she does all the things she enjoys, including playing ... Read More about Whether she’s embracing school, sports, or music, Lindsey shows how Williams syndrome can be managed
Guided by her own experience, one mom navigates Stickler syndrome with her children
Aimee is more than just Mum to three-year-old Arwen and one-year-old Cedric; she’s their guide to navigating Stickler syndrome, a genetic connective tissue disorder that can cause an underdeveloped jaw and airway obstruction (collectively known as Robin sequence), as well as cleft palate, vision and hearing difficulties, and other findings. As a carrier herself, Aimee ... Read More about Guided by her own experience, one mom navigates Stickler syndrome with her children
‘Part of the process’: How a second opinion helped Wynn take control of bladder function
Wynton “Wynn” Smith-Webb is “the most inquisitive kid you’ll ever meet,” laughs his mother, Amber. At just 3 years old, he’s intrigued by science, nature, travel, and even medicine. It’s a mindset he might have picked up from Amber, a professor who says she lives “knee-deep” in data every day. So when Wynn recently began ... Read More about ‘Part of the process’: How a second opinion helped Wynn take control of bladder function
Jumping higher, spinning faster: Max’s figure skating story
Thousands of fans around the globe have watched it, but very few people can do it. The quadruple Salchow, also known as the quad, requires that a skater launch themself into the air, spin four times, and land on one leg — ideally without falling or wobbling. The best figure skaters make skills like the ... Read More about Jumping higher, spinning faster: Max’s figure skating story
Lucas receives gene therapy for DMD and finds his super muscles
Lucas Toro has a lot in common with Gekko, the cartoon character from PJ Masks. They’re both “little guys” whose strength surprises people. And they both use their muscles for good. Getting strong is a new feeling for Lucas — one he’s using to blaze new trails for other kids. In September 2023, he became ... Read More about Lucas receives gene therapy for DMD and finds his super muscles
‘The reason I became a nurse’: Maeve’s memories of laryngeal cleft repair
Being a gastroenterology nurse is more than a profession for Maeve Lee. When she cares for patients with feeding tubes, she’s also paying it forward. More than two decades ago, Maeve experienced many of the same challenges her patients face today. Medical mystery At first, Maeve seemed like a perfectly healthy newborn, but then she ... Read More about ‘The reason I became a nurse’: Maeve’s memories of laryngeal cleft repair
Celebrating the unexpected, Miley’s family navigates Apert syndrome
Miley is the first girl born into her family in almost a generation. Hearing the delivery team announce, “It’s a girl,” is a moment her mom, Nicole, and her dad, Mike, will always remember. “We just cried,” says Nicole. “I’ll never forget that moment.” But what they also discovered at delivery was something else they ... Read More about Celebrating the unexpected, Miley’s family navigates Apert syndrome
‘Empowered to be there for Teagan’: New parents learn about hearing loss
Teagan O’Brien is a bright, spunky 4-year-old who loves reading, dancing, and playing outdoors. Her parents, Kim and Donnie, are firefighters who throw themselves into any new situation. Since they adopted Teagan three-and-a-half years ago, they’ve thrown themselves into supporting her with help from her team at Boston Children’s Hospital. Teagan was already a patient ... Read More about ‘Empowered to be there for Teagan’: New parents learn about hearing loss