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Your destination for kids' health

  • Finally a chance to breathe: Christiana gets care for Hirschsprung’s disease

  • ‘They had a plan’: How Sophia’s parents found care for ROHHAD syndrome

    My own secret superpower: Jocelyn’s journey with C3 glomerulopathy

    Finding answers and care for a rare movement disorder: Aisha’s experience with deep brain stimulation

طبيب يرتدي معطف المختبر الأبيض يبتسم لمريض شاب يرتدي سترة وردية ذات غطاء للرأس ويجلس على كرسي متحرك داخل غرفة الفحص.

العثور على إجابات ورعاية لاضطراب حركي نادر: تجربة Aisha مع التحفيز العميق للدماغ

Patient Stories
لقرابة عقد، بحثت عائلة Aisha عن إجابات لمرض عجزوا عن تسميته، بدأ منذ طفولتها المبكرة. ولدت Aisha في البحرين عام 2006، وكانت تبلغ من العمر عامًا واحدًا تقريبًا عندما لاحظت والدتها، Mariam، حركات لاإرادية في وجهها وشفتيها. ومع نموها، ظهر لدى Aisha تأخر في المشي والكلام والجوانب التطورية الأخرى. ورغم سنوات من المراجعات والفحوصات الطبية ... Read More about العثور على إجابات ورعاية لاضطراب حركي نادر: تجربة Aisha مع التحفيز العميق للدماغ
Tagged: complex care, genetics and genomics, Movement Disorders Program
a female toddler in a swimming pool

‘We’re gonna start over’: Finding the right care for Remi’s aspiration

Patient Stories
At almost 3 years old, Remi is confident, independent, and a bit headstrong. “She wants to do everything on her own,” laughs her mom, Gabrielle. “If we even try to dress her or put on her shoes, she tells us, ‘Only myself’ — she doesn’t want any help.” It’s a determined mindset that Gabrielle and ... Read More about ‘We’re gonna start over’: Finding the right care for Remi’s aspiration
Tagged: aerodigestive, feeding therapy, g tube
A woman smiles in an outdoor selfie with a teenage boy and girl.

Living fully: Kristin’s life with blue rubber bleb nevus syndrome

Patient Stories
More than 25 years ago, I spent 11 hours in surgery while a surgeon removed hundreds of abnormal blood vessels from my body. A lot has happened since. Today, I’m a mom raising two driven kids: a daughter who is a skilled athlete, and a son who’s taking two math classes just for fun. I ... Read More about Living fully: Kristin’s life with blue rubber bleb nevus syndrome
Tagged: anemia, blood, vascular anomalies
A young boy wearing a bucket hat smiles.

Accepting kindness and happiness: Ways Spencer’s family navigated his heart transplant

Patient Stories
Spencer Brock and his family recently vacationed in Ireland. They caught up with aunts, uncles, and cousins, and Spencer enjoyed visiting playgrounds, an amusement park, and a zoo. It was a dream-come-true trip in many ways. In October 2024, only six weeks after he was born, Spencer was diagnosed with restrictive cardiomyopathy, a severe disease that ... Read More about Accepting kindness and happiness: Ways Spencer’s family navigated his heart transplant
Tagged: cardiac surgery, cardiology, cardiomyopathy, heart, heart center, heart patient, transplant
A young woman smiles outside Rhode Island College’s Unity Center.

‘Comfortable in my own skin’: Grace thrives after weight loss surgery

Patient Stories
Grace Rocha has a favorite fun fact: She had weight loss surgery at 16. And when it comes to sharing her story, she’s an open book. “Why wouldn’t you want to tell people about that?” she asks. Grace credits her parents for her candor: Both have had gastric bypass surgery and have always been open ... Read More about ‘Comfortable in my own skin’: Grace thrives after weight loss surgery
Tagged: asthma, hypertension, obesity, surgery
A baby in a reindeer cap and brown drool cloth sitting in a car seat.

How Wyatt became the smallest baby to undergo PDA closure at Boston Children’s

Patient Stories
In June 2023, at 22 weeks pregnant, Madisen went into labor with twins. Her care team in New Hampshire transferred her to a maternal-fetal medicine center in Boston in hopes of delaying delivery, but Gavin and Wyatt arrived within hours. “Things just evolved quickly,” Madisen says. “I delivered Gavin first, and Wyatt about two and ... Read More about How Wyatt became the smallest baby to undergo PDA closure at Boston Children’s
Tagged: cardiology, heart, heart patient, newborn medicine, nicu, prematurity

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