Making a change: After a second opinion for spina bifida care, Sydney is thriving
At almost 10 years old, Sydney MacKay is sassy, spunky, and wants to be as independent as possible. Because she was born with spina bifida, part of that desire for independence means being more involved in her own care. Although Sydney underwent a surgical procedure a few years ago aimed at helping foster that independence, ... Read More about Making a change: After a second opinion for spina bifida care, Sydney is thriving
Full-family support sees Hannah and her parents through AVM surgery
Nine-year-old Hannah from Vermont is passionate about skiing; not much keeps her off the slopes. In fact, not much slows her down or dampens her energy, period. So, when she experienced a ruptured arteriovenous malformation (AVM) last spring, she wasn’t sidelined long. Her parents, Katie and Rich, credit Hannah’s remarkable recovery to her vivacious spirit ... Read More about Full-family support sees Hannah and her parents through AVM surgery
All in it for Hudson: A family’s shared path with cavernous malformations
Three-year-old Hudson loves trucks and PAW Patrol. He’s a delightful blend of sweet, fun, and feisty, and — after a seizure on New Year’s Day led to an extended stay at Boston Children’s Hospital — he’s an inspiration to his parents, Gabrielle and Matthew. To Matthew specifically, Hudson provides a new look at his own ... Read More about All in it for Hudson: A family’s shared path with cavernous malformations
Lily’s smile lights up the stage, thanks to orthodontic care
Thirteen-year-old Lily is a fan of the theatre — and she’s no stranger to taking the stage, having already performed in two plays just this past school year. “She’s always the most confident when she’s up on stage with her friends,” says her mom, Jade. Lily’s confidence is something that she recently stepped back into, ... Read More about Lily’s smile lights up the stage, thanks to orthodontic care
Un hito en la Costa Este: El bebé Isaac está evolucionando después de una reparación fetoscópica por minilaparotomía de espina bífida abierta
Isaac Suardi aún no lo sabe, pero ya ha hecho historia. Recién nacido en julio, es el primer bebé en la Costa Este en someterse a una reparación quirúrgica fetoscópica por minilaparotomía de un defecto del tubo neural (DTN) mientras aún está en el útero de su madre. “Sinceramente, no pensamos demasiado en eso”, admite ... Read More about Un hito en la Costa Este: El bebé Isaac está evolucionando después de una reparación fetoscópica por minilaparotomía de espina bífida abierta
Baby Isaac is thriving after an East Coast first for a neural tube defect
Isaac Suardi doesn’t know it yet, but he’s already made history. Just born in July, he’s the first baby on the East Coast to undergo mini-laparotomy fetoscopic surgical repair of a neural tube defect (NTD) while still in his mother’s womb. “Honestly, we didn’t think too much about that,” admits his father, Chris. “We knew ... Read More about Baby Isaac is thriving after an East Coast first for a neural tube defect
Jack had a first-of-its-kind surgery with the aim of making it his last
Jack Mangan loves fire trucks. He also loves monster trucks. So you can imagine his excitement about those two things being mashed up as a toy: a fire truck on top of a monster truck. The 4-year-old has an extensive collection of miniature hybrid monster trucks — one has a shark on top; another Scooby-Doo ... Read More about Jack had a first-of-its-kind surgery with the aim of making it his last
Beyond expectations: Treating Isaac’s teratoma through an EXIT procedure
Jennifer worked as a hairdresser until just days before delivering her son, Isaac, last December, even though she had planned to stop a week earlier. Beating expectations must run in the family because Isaac has been doing just that since before he was even born. He has amazed everyone around him with how well he ... Read More about Beyond expectations: Treating Isaac’s teratoma through an EXIT procedure
After surgery for a brain tumor, Jenny is moving ahead — and giving back
“It might sound weird,” says Jenny Eckert, “but I’m very grateful that I got hit in the face with a soccer ball.” A year and a half ago, Jenny, then 9, was playing soccer when she accidentally took a hit to the head — twice. Concerned about a possible concussion, her parents, Vanessa and Scott, brought ... Read More about After surgery for a brain tumor, Jenny is moving ahead — and giving back
No labels or limits with Apert syndrome: A letter to parents
Dear parents, If you’re reading this, your child might have been recently diagnosed with Apert syndrome and you don’t know what comes next with this rare genetic disorder that causes fusion of your child’s skull, hands, and foot bones. Or maybe you’ve been in the Apert world for a while and are looking for people ... Read More about No labels or limits with Apert syndrome: A letter to parents