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Guided by her own experience, one mom navigates Stickler syndrome with her children

Posted on by | Patient Stories
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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
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‘Part of the process’: How a second opinion helped Wynn take control of bladder function

Posted on by | Patient Stories
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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
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Optimal care, lower costs: Examining the benefits of out-of-network care for pediatric moyamoya

Posted on by | Clinical, Research
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Moyamoya disease is a rare condition that affects the blood vessels in the brain, especially in children. Narrowing and blockage of vessels significantly increases the risk of stroke and requires surgical revascularization for treatment. Although research shows that outcomes of revascularization are better at high-volume centers, insurers often hesitate to approve out-of-network care. However, a ... Read More
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Jumping higher, spinning faster: Max’s figure skating story

Posted on by | Patient Stories
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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
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Lucas receives gene therapy for DMD and finds his super muscles

Posted on by | Patient Stories
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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
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‘The reason I became a nurse’: Maeve’s memories of laryngeal cleft repair

Posted on by | Patient Stories
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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
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Three ways to ensure your child has the proper asthma medication

Posted on by | Clinical Care, Specialty Care
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Children who have asthma should always have access to medication. But a manufacturer’s decision to stop producing a popular asthma drug has many families scrambling to find alternative medications that are covered by health insurance. Prescriptions sometimes change for families because a medication is discontinued or there are coverage changes by health insurers and pharmacies, ... Read More
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Celebrating the unexpected, Miley’s family navigates Apert syndrome

Posted on by | Patient Stories
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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
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How Boston Children’s physicians have teamed up to tackle obesity and food insecurity

Posted on by | Clinical Care
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When nutritious, high-quality food is not easily accessible, families are often left to purchase what is available — usually, highly processed, nutrient-poor food. Children in these households — who also have food insecurity and various socio-economic stressors — face additional barriers and are at risk for developing chronic diseases, such as obesity.  To address such ... Read More
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‘Empowered to be there for Teagan’: New parents learn about hearing loss

Posted on by | Patient Stories
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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
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