Making history: Gene therapy for CCALD gives Conner a second chance
Like a lot of 6-year-olds, Conner Hess finds joy in simple acts: drawing pictures, cuddling his two cats, and playing video games with his father. When his fun times at home in New York are interrupted by trips to Boston Children’s Hospital, he knows it’s to help fix a “boo-boo” in his brain. What he ... Read More about Making history: Gene therapy for CCALD gives Conner a second chance
Running the Boston Marathon with a purpose: Ben’s liver transplant journey
Ben is no stranger to sports — in fact he’s probably the most excited when he’s able to get on a soccer field or with his team. This April, he’ll be running alongside the Boston Children’s Hospital team at the Boston Marathon! At 18 years old, Ben has already overcome incredible challenges, so taking on ... Read More about Running the Boston Marathon with a purpose: Ben’s liver transplant journey
‘Sami’s trach helps him breathe’: Living with laryngeal cleft
Today, Sami is a playful toddler with so much energy that his parents need to remind him to take breaks. It’s a big change from just four years ago when he struggled to eat, drink, and breathe before being diagnosed with a laryngeal cleft. Sami’s parents, Ala’a and Mohamad, knew before he was even born ... Read More about ‘Sami’s trach helps him breathe’: Living with laryngeal cleft
We didn’t give up hope: Emily’s fighting chance with her lung transplant
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
How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story
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
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’