Molly’s story: Care for a rare condition close to home

Curly-haired, bright-eyed Molly Leary pushes a plastic baby stroller filled with a pile of books and one baby doll. She spends a sunny afternoon on the lawn reading, singing ”Itsy Bitsy Spider” and playing her purple guitar. She sits down to read with her mom Kerry and then pops up into what feels like a never-ending spin. “Dizzy?” Kerry asks. “Nope!” says Molly with a big grin. Her love of life is infectious.

Watching this unstoppable five-year-old twirl around in circles, you’d never know that she’s quite mixed up on the inside. Molly was born with heterotaxy, a rare congenital defect that results in various organs forming on the opposite side of the body. She spent the first eight months of her life at Boston Children’s Hospital, as detailed in the below timeline.

Kerry can recite every detail of those eight months like it was yesterday. “On top of all of the major events, she had daily chest x-rays, countless ultrasounds, bronchoscopies, a few trips to the cath lab and a broviac catheter surgically inserted.”

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Molly with Dad Jay who remembers, “It was really hard to stay hopeful, but we tried to focus on the positive. We never thought she wasn’t going to make it. We were never made to feel like we were fighting for nothing.”

During the first months of Molly’s life, Kerry and husband Jay went to their full-time jobs in the morning, spent the evenings at Boston Children’s with Molly and then drove an hour back to their home in Haverhill, Mass. to sleep.

Molly doesn’t remember the experience and barely even goes to Boston Children’s main campus any more.

Soon after her daughter was discharged from Boston Children’s, Kerry switched Molly’s care to Boston Children’s at Peabody, a 20-minute drive from their home on the North Shore.

Molly is followed by Gastroenterology to keep an eye on her intestines and Orthopedics to maintain the strength in her legs. She also sees the same cardiologist in Peabody that she had in Boston — Dr. Jonathan Rhodes — who knows Molly well and gives her family hope that she will go on to live a healthy life. “Molly is doing great and I expect big things from her!” he says.

“Dr. Rhodes is hopeful,” says Kerry, “and Jay and I are hopeful, but you never know what the future holds. We try to give Molly the best life we can. We don’t want to spoil her, but at the same time we give her everything she needs and wants.”

Molly is a sweet little ball of energy who keeps going and going, always with a smile. She is down from 22 to two daily medications and is hitting her academic milestones in preschool.

“Every day we are amazed by her,” says Kerry. “Little things that other parents probably take for granted, we don’t. We praise her for every full sentence she speaks; for every single thing she does, because at one time there was a huge possibility that we were never going to witness this.”

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Kerry is thankful for the normalcy of life now. She has figured out how to work from home and delights in the everyday with Molly—talking, reading, singing and most of all, laughing. Her generous smile is infectious. Like mother, like daughter.

Learn more about Boston Children’s at Peabody.