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Charlotte, who got a second opinion before she was born, smiles

Second opinion gives Charlotte a second chance

Patient Stories
After struggling to conceive their second child, Jennifer and Keith Bent were thrilled when Jennifer became pregnant. The results of genetic testing were normal and confirmed they would be welcoming a daughter in April of 2016. Jennifer felt the baby’s first kicks on Nov. 23, 2015. The next day, she was scheduled for an anatomy ... Read More about Second opinion gives Charlotte a second chance
Tagged: neurology, second opinion, ventriculomegaly
Saif and his physician pose together after the surgery that corrected his cervical spine.

Saif looks ahead to life after spine surgery

Patient Stories
Saif and his mother, Khawha Abbas, both had questions for Dr. Daniel Hedequist. For the past nine months, the family had lived in Boston while Saif underwent treatment for a severe spinal deformity. They were scheduled return to the United Arab Emirates (UAE) that evening, but first, Saif wanted to know if he would be ... Read More about Saif looks ahead to life after spine surgery
Tagged: complex cervical spine, halo traction, international, neurosurgery, orthopedics, spinal cord injury, spinal fusion surgery
Faith, who has a single ventricle heart defect, poses in her birthday tutu

A sign of Faith in one little girl’s single ventricle journey

Patient Stories
Nicole and Charlie Parker were no strangers to adoption when they embarked on the journey to bring their daughter Faith home from Langfang, China — they had previously adopted two of their four children. What they were not familiar with was raising a child with a complex congenital heart condition. Faith was born with a ... Read More about A sign of Faith in one little girl’s single ventricle journey
Tagged: heart, heart center, heart patient, single ventricle defects
mason sits in the hospital before a visit for his dyskeratosis congenita

Not all heroes wear capes: Taking on dyskeratosis congenita

Patient Stories
When Mason Langlais argues with his sister, Jillian, he regularly repeats a mantra. “I’m the rare one,” he says. “So, you can’t treat me like this.” “Rare” and “one in a million” — those are just a few of the words his mom, Jenn, uses to describe her 7-year-old self-proclaimed super hero. It’s how she ... Read More about Not all heroes wear capes: Taking on dyskeratosis congenita
Tagged: dyskeratosis congenita, rare disease, research, stem cell transplant, telomere disease
Bryan, who had surgery to remove an AVM, poses for a picture

Back from the brink: How Boston Children’s saved my life

Patient Stories
I was first rushed to Boston Children’s Hospital on my very first night of summer vacation in June 2015. I had been at an eighth-grade graduation party when a brain aneurysm caused by an AVM (arteriovenous malformation) ruptured. All the blood and swelling in my head generated the worst headache I had ever felt. I ... Read More about Back from the brink: How Boston Children’s saved my life
Tagged: arteriovenous malformation, brain aneurysm, cerebrovascular surgery and interventions center, neuroscience, neurosurgery
Boy with Fanconi anemia smiles

Following clinical trial, boy with Fanconi anemia transfusion free

Patient Stories
Seven-year-old Ervis of Chicago, Illinois, is a model student with a positive attitude and a megawatt smile. His mom Ofelia calls him “un encantador” — “a charmer,” but life as Ervis knows it is not exactly charmed. Born with Fanconi anemia (FA), a rare hereditary blood disorder that can lead to bone marrow failure and cancer, ... Read More about Following clinical trial, boy with Fanconi anemia transfusion free
Tagged: anemia, blood, clinical trials, rare disease, research
Gavin, who has Crohn's disease, in the woods with his dog

Gavin: My Crohn’s disease story

Patient Stories
When I was 10 years old, I was diagnosed with Crohn’s disease. For a few months at the end of fourth grade, I didn’t feel well on and off. I was having stomach pains and diarrhea a couple times a week. In June I went to see my doctor and she thought I was developing ... Read More about Gavin: My Crohn’s disease story
Tagged: inflammatory bowel disease
sydney sits at her desk after being treated for pain

Minimally invasive approaches help ease Sydney’s chronic pain

Patient Stories
Sydney Hart wants to reimagine the traditional “handicap” symbol. In her online shop, she offers pins, stickers, and other products that infuse the classic wheelchair silhouette with yin-yang symbols, LGBTQ and transgender flags, and even sassy devil horns. “I hope that having symbols with more character will open up the conversation and humanize people with ... Read More about Minimally invasive approaches help ease Sydney’s chronic pain
Tagged: interventional pain, muscular dystrophy, pain
Nicole and Alana, who both had PAO surgery to correct their hip dysplasia, dance together in a park.

Nicole and Alana: A friendship formed in dance

Patient Stories
I was holding myself back, scared I would hurt myself, but Alana helped me realize I could push myself safely. She helped me gain confidence and trust in my dancing body again.
Tagged: hip dysplasia, hip preservation, labral tear, orthopedics, pao surgery, performing artist athletes, sports medicine
boy with spina bifida racing in his wheelchair

Another level of gratitude: Spina bifida care for Liam

Patient Stories
Most parents first walk through the doors of Boston Children’s Hospital seeking answers about their child’s health. But until recently, when Mary Holleran arrived at the hospital, she was simply beginning another day at work. A nurse practitioner, she’s been on staff at Boston Children’s for more than a decade, much of it spent caring ... Read More about Another level of gratitude: Spina bifida care for Liam
Tagged: orthopedics, spina bifida, tethered spinal cord, urology

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