Josephine DeFilippi (Josie) describes the day of her scoliosis diagnosis as the hardest day of her life. Right when she was looking forward to middle school, ten-year-old Josie was shocked to learn she had a condition she’d never even heard of before.
On that same day, however, an unexpected gift from someone she’d never met let Josie know she wasn’t alone. Six months later, she decided to provide other kids with scoliosis the same sort of comfort.
“You have scoliosis”
Josie and her mother Melissa did not expect to hear that Josie had scoliosis when they went to Boston Children’s Hospital in July 2022. Josie’s pediatrician had noticed that one of her shoulders was higher than the other during a routine checkup and suggested the appointment. But an x-ray clearly showed the sideways curve in her spine.
Dr. Grant Hogue of Boston Children’s Spine Division sat down with Josie and Melissa and told them she had a moderate 26-degree curve. In many ways, this was good news. Curves of 45 degrees or more typically require spinal fusion surgery. Instead, Dr. Hogue recommended a scoliosis brace. The brace, which Josie would wear 18 hours a day for the next five years, wouldn’t cure her scoliosis, but it could prevent her spine from curving more.
Josie is an active, energetic tween who loves cheering and swimming. She’d struggled with other health issues since she was a toddler. But now those issues were under control, and she was looking forward to a fresh start. The diagnosis came as a terrible blow.
“I couldn’t stop crying,” says Josie.
“It was an overwhelming day,” adds Melissa. “I was trying to make sense of it all while putting on a brave face for Josie.”
Nurse Nichole Cicchetti walked with Josie and Melissa over to the brace shop. On the way, she asked Josie if she had a teddy bear or American Girl doll. When Josie told her about her doll Rosie, Cicchetti asked her if she’d like to have a brace made for Rosie too.
“Nichole was a light in the storm that day,” says Melissa. “Josie was able to turn her focus from shock to looking forward to her and Rosie having matching braces.”
Adjusting to the scoliosis brace
It took time to get used to the brace: sleeping in it, wearing clothes over it, going to school in it. On days when she felt low, Josie and her mom sang together. Lyrics from The Greatest Showman, “I am brave, I am bruised. I am who I’m meant to be, this is me,” summed up Josie’s feelings about having scoliosis. Those words also helped her find the courage and confidence to share her diagnosis and not hide her brace from others.
Having a brace for Rosie had helped Josie shift her focus from shock to something more comforting. “We talked about how wonderful it would be to pay that forward,” says Melissa.
Josie decided to become an ambassador for the non-profit organization that had funded Rosie’s brace. She and Melissa set up a fundraising page and started sharing it with friends. To their surprise, they raised more than four times as much as they thought they would — enough to purchase 150 stuffed animals in scoliosis braces.
An ambassador and a unicorn
In May 2023, ten months after the hardest day of her life, Josie greeted boxes and boxes of furry, braced companions into her home. As fun as it was to sit in a sea of stuffed bears, giraffes, zebras, elephants, alligators, and sloths in braces, it was even better to deliver them to four Boston Children’s locations for other kids diagnosed with scoliosis.
This was new to us, but it wasn’t new to them. I could relax into that, knowing that Josie had specialists who knew how give her the best care.”
Amid the joy of helping other people, Josie got some great news. The curve in her spine had shrunk from 26 to 19 degrees. When Dr. Hogue delivered the unexpected news, he added, “This is very rare.”
“He calls me his unicorn,” says Josie proudly. She continues to wear a brace to prevent her curve from increasing again. But being a unicorn, having a brace for Rosie, and knowing she has helped other kids makes wearing the brace easier.
For Josie’s parents, the expertise at Boston Children’s helped put their minds at ease.
“It was a hard day when we found out Josie had scoliosis,” says Melissa. “But we were the seventh family they’d given that news to that week. This was new to us, but it wasn’t new to them. I could relax into that, knowing that Josie had specialists who knew how give her the best care.”
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