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Emily jumps in the air with her arms and legs out like a star.

We didn’t give up hope: Emily’s fighting chance with her lung transplant

Patient Stories
Emily lights up every room she’s in with her giggles and confidence — not to mention her sparkly painted nails and glittery makeup. At 6 years old, she’s able to win people over with her bright smile and electric personality. All this is made possible because Emily was given the gift of life — an ... Read More about We didn’t give up hope: Emily’s fighting chance with her lung transplant
Tagged: complex care, interstitial lung disease, pulmonary hypertension, transplant
Chad in sunglasses and his daughter, Izzy -- in a stroller -- smile before run.

How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story

Events, Patient Stories
Go to any marathon starting line and you’re bound to find someone who was “never a runner” until something — or someone — motivated them to tie up their laces. Chad Goyette is one such runner. But today, he’s fresh off the Atlanta Marathon and gearing up to run Boston. His inspiration? His daughter, Izzy. ... Read More about How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story
Tagged: cleft palate, craniofacial, feeding therapy, nicu, physical therapy, Robin sequence
A man with facial differences smiles at the camera while standing outside on a sunny day.

Decades in the making: JR’s journey with craniofacial care

Patient Stories
Last fall, JR Foley posted on Facebook to thank members of the Craniofacial Program at Boston Children’s Hospital for seeing him through corrective jaw surgery. The post wasn’t JR’s first note of thanks, and it wasn’t his first surgery, either. JR’s been receiving care at Boston Children’s Hospital for more than 30 years. Treating the ... Read More about Decades in the making: JR’s journey with craniofacial care
Tagged: craniofacial, dentistry, neurosurgery, plastic surgery, psychiatry
A high school hockey goalie in her uniform and gear.

How I hear you: Isabelle’s cochlear implant story

Patient Stories
Isabelle is a thriving AP student, hockey player, and online gamer who listens to music and communicates with the help of cochlear implants. When people ask about the devices behind her ears, she responds, “They’re my ears. That’s how I hear you.” Fourteen years ago, when Vicki and Jason learned one of their newborn twins ... Read More about How I hear you: Isabelle’s cochlear implant story
Tagged: cochlear implants, hearing, otolaryngology
Held by his parent, Yah'ir looks into the camera.

After complex heart surgery, Yah’ir is all smiles

Patient Stories
Christina Moreland and Jimmy Austin want their 6-month-old son, Yah’ir, to have a bright future, one where he can pursue all of his dreams. “He can do whatever he wants to do,” Christina says. There’s just one caveat, an understandable one considering that Yah’ir is recovering from complex heart surgery. “As long as he doesn’t ... Read More about After complex heart surgery, Yah’ir is all smiles
Tagged: av canal, congenital heart defect, fetal cardiology, Fetal Care and Surgery Center, fetal medicine, heart, heart center, heart patient, pregnancy
Paul Terry, a patient with Kleefstra syndrome, stands near a lighthouse in a “Cape Cod, Mass” T-shirt.

Cracking the code on Kleefstra syndrome: It takes a community

Patient Stories, Research
Paul Terry is a staunch advocate for people with rare diseases — but researchers were only able to put a name to his condition five years ago. It was an answer he and his family had long sought. When Paul was a baby, his parents saw that he wasn’t hitting all his milestones. Their pediatrician ... Read More about Cracking the code on Kleefstra syndrome: It takes a community
Tagged: developmental milestones, intellectual disability, learning disabilities, neurology, rare disease
Alyvia holds a proclamation from Mississippi's governor that advocates heart health.

Treatment for a complex congenital heart defect gives Alyvia ‘endless energy’

Patient Stories
She may be just 3 years old, but Alyvia Parker is already making a difference for other kids with congenital heart defects (CHD). This month, she was a guest of honor at Gulfport City Hall, where, thanks to her and her mom’s advocacy, their hometown lawmakers proclaimed it Congenital Heart Defect Awareness Week. The two also ... Read More about Treatment for a complex congenital heart defect gives Alyvia ‘endless energy’
Tagged: biventricular repair, cardiac surgery, congenital heart defect, heart, heart center, heart patient, tricuspid atresia
A swaddled baby girl in a NICU bassinet.

I’ve been there, too: What my baby’s tumor taught me as a NICU nurse

Patient Stories, People
I had a toddler at home when I found out I was pregnant with my twins, Hannah and Sophie. Since I had already had a baby, I thought I knew what to expect during my pregnancy. I also work in the neonatal intensive care unit (NICU) at Boston Children’s Hospital, so I thought I was ... Read More about I’ve been there, too: What my baby’s tumor taught me as a NICU nurse
Tagged: blood disorder, cancer, nicu, nursing, vascular anomalies
A young boy holds a large stuffed dog while playing with a toy train.

A different kind of hearing: Caleb’s cochlear implant

Patient Stories
Caleb recently told his mother, “I think I’m going to write my own stories.” This news didn’t surprise his parents, Wendy and Chris. For several years, 8-year-old Caleb has filled notebook after notebook with pictures and stories. His stack of favorite books includes Boxcar Children and The Chronicles of Narnia. But given some of his ... Read More about A different kind of hearing: Caleb’s cochlear implant
Tagged: autism, cochlear implants, hearing, otolaryngology
A boy in a green parka throws a handful of snow out in front of him.

From Pakistan to Boston: Faiz finally found help for his complex heart condition

Patient Stories
Don’t let his shy smile fool you. In his hometown of Lahore, Pakistan, 6-year-old Muhammad Butt is known by the nickname “Faiz the fighter.” Faiz had long defied the predictions of local doctors who said the heart surgery he needed would be complicated and instead advised his parents to enjoy the time they had with ... Read More about From Pakistan to Boston: Faiz finally found help for his complex heart condition
Tagged: biventricular repair, cardiac catheterization, cardiac surgery, congenital heart defect, double outlet right ventricle, heart, heart center, heart patient, international, pulmonary vein stenosis

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