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
Rowan the Remarkable: Defying the odds with CPAM
This is the story of a baby named Rowan and his remarkable journey of beating the odds after doctors discovered a potentially fatal mass on his lung in utero. This is also the story of his mother, Casey, who fought for him every step of the way, and the medical professionals whose collaboration and planning ... Read More about Rowan the Remarkable: Defying the odds with CPAM
Twenty years after a groundbreaking biventricular repair, Faith gives back by helping children with CHD
Faith Brackett doesn’t remember every detail of the time she was among the first children to have a new life-saving heart surgery. She was 7, after all, when she had a biventricular repair — a procedure that creates two functioning ventricles in a heart relying on just one. But she does remember how the surgery finally gave ... Read More about Twenty years after a groundbreaking biventricular repair, Faith gives back by helping children with CHD
It takes a village and the world: Tariq’s care for Tourette syndrome
When your child is sick but you can’t figure out the cause or how to fix it, it can leave you feeling helpless and frustrated. It can also test how far you’ll go for answers. Just ask Salem of the United Arab Emirates (UAE), who moved with his family to Boston so his son Tariq ... Read More about It takes a village and the world: Tariq’s care for Tourette syndrome
New possibilities: How Caden learned to manage chronic pain — and found an unexpected path
In October 2020, Caden Deutsch started feeling sick. Although the 17-year-old had been coping with juvenile idiopathic arthritis since he was in sixth grade, this was different. By the following year, what had begun as brief episodes of gastrointestinal discomfort had progressed to constant, excruciating pain. “I’d been living with chronic joint pain for years, ... Read More about New possibilities: How Caden learned to manage chronic pain — and found an unexpected path