Last time 6-year-old Gracyn-Rose was staying at Connecticut Children’s, she turned to her long-time nurse Meaghan Schneider.
“You’re my second mom,” she told Meaghan. “You’re my hospital mom.”
In her young life, Gracyn has been hospitalized more than 20 times for a rare gastrointestinal disorder. By now, nurses like Meaghan are practically family. And the whole staff on the floor — known as MS6 — rallies around her.
“Gracyn is so resilient and caring, and she always puts a smile on our faces with her silly and goofy personality,” says Meaghan. “She never lets her illness stop her from anything. That’s one of the reasons she inspires me.”
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When Gracyn was 2 years old, she was diagnosed with chronic intestinal pseudo-obstruction (CIP, or CIPO).
It’s a rare condition: Only about 100 children are born with it each year. It means that the nerves and muscles inside the intestines don’t work the way they’re supposed to, causing problems with how food and fluids moves through the body. That affects everything from going to the bathroom to how the body absorbs nutrients.
To live with such a complex condition, Gracyn needed a team with many different specialists, and access to state-of-the-art tests and treatments. She found it at Connecticut Children’s Center for Neurogastroenterology and Motility Disorders. “Gracyn is in great hands here,” says Corey Baker, MD, the center’s director.
She also needed an ileostomy, a surgery to connect her intestines to a special bag outside her body. For people with CIP, it’s a way to live with less pain, and to avoid dangerous health issues.
To Gracyn’s parents, Sherry and Paul, the road to a diagnosis had been scary enough. The thought of major surgery was terrifying. But then they met the pediatric surgeon who would lead it: Christine Finck, MD, Connecticut Children’s surgeon-in-chief. Dr. Finck’s warmth and patience made a difficult time easier.
“We love Dr. Finck so much,” says Sherry. “She guides us and makes us feel so comfortable. She always makes us feel heard and not dismissed. I can’t even begin to tell you how much we’ve relied on her. She’s amazing.”
Dr. Finck quickly made an impression on Gracyn too. Now, when Gracyn is playing doctor with her dolls, she always names one of them Dr. Finck.
Honestly, Connecticut Children’s is our second home. We know our girl is fully taken care of, and treated with such compassion and love. The support system is beyond words.
Sherry,
Gracyn's Mom
Since that first surgery, and ongoing procedures to keep her ileostomy working properly, Gracyn’s been feeling much better. She’s in a lot less pain, and is finally a healthy weight.
But she still has a lot of medical needs. When she was 3 years old, Dr. Finck placed a feeding tube (G-tube) through her belly to help her absorb nutrients. Gracyn also needs regular bloodwork, and ongoing check-ins with Dr. Baker and the Gastroenterology (GI) team. She has to keep an eye out for certain health challenges: For example, she has a harder time staying hydrated than other kids, and common illnesses are often more complicated for her.
So it’s important she has a team she loves.
During health scares, Sherry’s first call is to Meghan Martin, a GI nurse practitioner who’s been taking care of Gracyn since she was 9 months old. (At this point, Sherry and Meghan know each other’s phone numbers by heart.) The family recently did a 5K fundraiser with Dr. Finck’s executive assistant, Pamela Masella, who has always gone out of her way to make Gracyn feel special.
“Honestly, Connecticut Children’s is our second home,” says Sherry. “We know our girl is fully taken care of, and treated with such compassion and love. The support system is beyond words.”
Over the winter, Gracyn spent several weeks at Connecticut Children’s with the flu, and then a stomach virus. Sherry posted Instagram photos of Gracyn sprawled on the floor with art supplies and Connecticut Children’s Child Life specialists. On what would’ve been Gracyn’s 100th day of class, the team helped her dress up, Zoom with the other students, and do special activities. She couldn’t go to school, so Connecticut Children’s brought the school to her.
“A massive thank you to Connecticut Children's,” Sherry wrote in the photo caption. “You’re our second family.”
Gracyn’s personality stands out in any crowd — goofy, feisty, bold. Family videos show her as a toddler, holding epic dance parties in the kitchen, connected to an IV for hydration. Even when she’s not feeling well, she never stops clowning around.
Her strength stands out too. Gracyn’s health journey hasn’t been easy, and she will always have some unique challenges. But she is fearless about the road ahead. At 6 years old, she’s already starting to take charge of her own medical responsibilities where she can, and knows what to watch out for to stay healthy.
Her family, including older siblings Brooke, Brady and Giulianna, couldn’t be prouder. Sherry and Paul are already starting to explain to Gracyn what a powerful example she is setting for other kids with health challenges — and, for that matter, adults.
“I want her to feel like: This is who you are. Take pride in it,” says Sherry. “You may have one of these invisible diseases, but it’s OK. It makes you stronger.”
Gracyn is an example of finding the joy — and being the joy — in every situation. And she’s proof that, with the right care, being your silliest, brightest, most awesome self is never beyond imagination.
“Our girl is tough, resilient, sassy, funny, smart, and beautiful,” Sherry says. “We are beyond grateful and lucky to have the team we have at Connecticut Children’s. They truly have been wonderful.”
