Decades in the making: JR’s journey with craniofacial care
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
How I hear you: Isabelle’s cochlear implant story
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
After complex heart surgery, Yah’ir is all smiles
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
Cracking the code on Kleefstra syndrome: It takes a community
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
Treatment for a complex congenital heart defect gives Alyvia ‘endless energy’
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’
I’ve been there, too: What my baby’s tumor taught me as a NICU nurse
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
A different kind of hearing: Caleb’s cochlear implant
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
From Pakistan to Boston: Faiz finally found help for his complex heart condition
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
Pieces at work: Luca’s experience with Apert syndrome
Luca Paolacci, 24, is pursuing his bachelor’s degree in mechanical engineering. It’s a serendipitous major given that it studies how pieces come together to create specific force and movement, and Luca’s personal story is a study of the opposite: how creating separation can build strength, movement, and dexterity. “It has always fascinated me how tiny ... Read More about Pieces at work: Luca’s experience with Apert syndrome
Jenna’s comeback from PAO surgery
By the time Jenna was 14, her off-and-on hip pain had become an always-on issue. The accomplished soccer player and runner from Southern California had experienced intermittent pain since she was 12. She tried physical therapy to ease the hip pain, but it only got worse as she competed at higher levels. Over time, her ... Read More about Jenna’s comeback from PAO surgery