When 5-year-old Sofia Cortese hears she won’t be going into school today – whether from a doctor’s appointment, school holiday or because classes will be online this week – she has a predictable reaction.
“She’ll say, ‘But my friends are going to miss me!’” says mom Renata. And she’s right. Everyone in Sofia’s school building knows her, from the teachers to kids in other grades. When she rolls through the halls, she says hi to all of them.
“In the hallway you’ll hear, ‘Here comes Sofia! Hi Sofia!’” says Renata. “She’s very, very, very social.”
And if it isn’t obvious from the crowd around her, her bright pink eyeglass frames, and the big bow that’s always in her hair: She is fun.
Connecticut Children’s helps Sofia keep the fun going.
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Sofia was born with spina bifida, a condition where the spine and spinal cord aren’t formed properly. She cannot move or feel anything from the waist down. She zips around in a wheelchair most of the time (she is fast and loves to pop wheelies), and is building her skill with a modified walker.
Last year, Sofia’s legs began bending sideways because of stiff tendons in her hips and legs, a common side effect of spina bifida. Jeffrey Thomson, MD, head of the Division of Orthopedics, performed surgery to release the tendons and straighten her legs.
“Dr. Thomson told us, don’t be nervous, I’ve done this for many years, and it’s going to work,” Renata remembers. “He fixed it. Now her legs are very, very straight. It’s beautiful.”
A few months before that, pediatric ophthalmologist Majida Gaffar, MD, performed surgery to correct Sofia’s right eye from straying sideways. Last spring, pediatric gastroenterologist Victoria M. Grossi, DO, MS, placed a feeding tube in Sofia’s stomach to help her get enough nutrients. Because Sofia requires a catheter to pee, she regularly sees pediatric urologist Anne G. Dudley, MD, to check on her bladder.
All this care is coordinated: “Everybody is on the same page, everybody communicates between them,” says Renata.
Until Sofia was 2 years old, her family lived in Florida. Back then, Renata remembers always feeling anxiety about Sofia’s health, partly because they lived two hours from the closest hospital. Now that they live in Burlington, Conn. and come to Connecticut Children’s, care is just 20 minutes away – and they trust Sofia’s team completely.
“I feel that Sofia is safe with Connecticut Children’s. I don’t feel worried anymore,” Renata says. “We found peace here.”
“Every single day, she wears a bow.”
At weekly physical therapy appointments, Sofia’s therapist, Ashley Barnas, PT, DPT, uses equipment like harnesses and leg braces so Sofia can feel what it’s like to do things she usually can’t, like ride a bike. Renata recently took a photo of Sofia in a special harness, scaling the climbing wall at the physical therapy gym. She captioned it “From impossible to I’m possible!” Sofia is beaming.
Sofia’s daily life is filled with a lot of health challenges, but “she is always, always happy,” says Renata. “She’s very positive, and she always has exciting ideas for what to do next.”
One day, she’ll wake up and say she wants to do her brothers’ hair (she has seven older brothers, three still at home with her); the next, she’ll ask Renata to run out and buy black lipstick so they can dress up like rock ‘n rollers. She loves side ponytails, tutus, bracelets… and bows.
“Every single day, she wears a bow,” says Renata. “Basically, we only take the bow off for her to shower and sleep. I really don’t know how many she has – maybe 50?”
In other words, she’s the life of the party. Connecticut Children’s is thrilled to be invited.
