Archive for craniofacial
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
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
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
New year, new face, same spirit: Zoey’s journey with encephalocele and cleft lip care
Seven-year-old Zoey loves school, her friends, and everything unicorn. She’s outgoing and happy and has an eye for looking her best. “She loves getting her nails done,” says her mother, Shana. “She’s straight diva.” Talking with Zoey and her mom, you can’t help but be inspired by their positive spirit, care toward others, and general ... Read More
Weathering the storm of Apert syndrome: João’s story
After a “perfect” pregnancy in 2017, Natalia and Igor of Brazil were excited to meet their third child. They were shocked when João was whisked away moments after delivery. “Up until the day before he was born, everything seemed very normal,” says Natalia. “But once he arrived, we could see immediately that something was wrong: ... Read More
Superando as dificuldades da síndrome de Apert: a história do João
Depois de uma gravidez “perfeita” em 2017, os brasileiros Natália e Igor estavam emocionados por conhecer seu terceiro filho. Eles ficaram chocados quando os médicos arrebataram João uns instantes após o parto. “Até o momento em que ele nasceu, tudo parecia muito normal”, afirma Natália. “Mas quando ele chegou, imediatamente percebemos que havia algo errado: ... Read More
Sonny’s story: How an online Apert syndrome community set one family on a path to Boston
Sonny Daniel has had a busy summer. Between traveling, camp, and time with family and friends, this 4-year-old has constantly been on the go — something his parents, Kellie and Josh, are incredibly grateful for. Their gratitude stems a lot from seeing how far Sonny’s come in his journey with Apert syndrome, a genetic disorder that ... Read More
There’s no stopping Jack: His journey with craniosynostosis
Jack is almost 2 years old and loves to swim, chase his older sister around the house, and just bring lots of laughs to everyone he meets. For such a happy kid, he’s had an uphill battle to get to this point — starting when he was born. “Something wasn’t right with the shape of ... Read More
Miles for Jack: Robin sequence and the bond between a family and doctor
For runners and non-runners alike, next week’s Boston Marathon is extra special. It marks a beloved tradition for the city, and for many, it’s a chance to once again run for those who can’t and bring awareness to causes worth fighting for. For 6-year-old Jack Ryan, this year’s marathon is a chance to cheer on ... Read More
A kiss from their sister: A family’s journey with cleft lip care
Kelly and Ben’s experience with cleft lip care at Boston Children’s Hospital spans multiple years and multiple children. Two of their daughters, Molly and Annie — five years apart in age — were born with an incomplete unilateral cleft lip. The couple won’t shy from admitting that receiving the diagnosis doesn’t get easier. “It’s a ... Read More