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
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
Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
Shannon’s journey through a challenging pregnancy with TTTS (twin-twin transfusion syndrome) was, as she puts it, an emotional rollercoaster. In addition to the usual first-time parent jitters and the unexpected news of twins, Shannon and Mike navigated the emotional ups and downs of the rare pregnancy complication. TTTS put their twins at severe risk of ... Read More about Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
An act of kindness — Raul and Larry’s journey to a non-directed transplant donation
Acts of kindness can come in many forms, like volunteering or donating to a charity of choice. At 52, Larry loves giving back to his local community in Vermont, which is why he works in law enforcement. However, he has taken these thoughtful acts of kindness to another level — he’s donated one of his ... Read More about An act of kindness — Raul and Larry’s journey to a non-directed transplant donation
‘Everything fell into place’: Innovative POEM procedure lets Peyton eat without pain
Peyton Reed, 14, is a typical teenage boy: He enjoys tennis, video games — and food. So when eating became so painful for him that he started losing weight, his parents knew it was time to get him help. The problem began gradually enough five years ago, with bouts of what seemed liked heartburn. Because ... Read More about ‘Everything fell into place’: Innovative POEM procedure lets Peyton eat without pain
One day closer: Second opinion for urologic pain changes Iker’s life at last
Like many kids, Iker Guzman enjoys playing with LEGO toys. But there was nothing lighthearted about the day a few years ago when he used the tiny bricks to spell out one word on the floor: HELP. It was a message his parents, Elsa and David, had already taken to heart. For years, they had ... Read More about One day closer: Second opinion for urologic pain changes Iker’s life at last