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.

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10-year-old travels from Houston to Boston and wows her surgeon with piano performance

Jessica pianoJessica Lewsley’s annual follow-up appointment with her orthopedic surgeon Dr. Peter Waters is a fairly routine affair—x-rays and strength and function testing. Jessica was born with a birth defect to her left hand, which developed only a thumb and little finger. “Dr. Waters always shares little pearls of wisdom, and we all look forward to our visit every year,” says Jessica’s father Mike.

This year’s visit, however, was a bit different.

Mike pulled out his iPad and showed Waters a Jessica playing “Alouette” on the piano.

“It will move you to tears,” says Waters. “Rather than focusing on what is missing, Jessica and her family have been great about celebrating all that she can do. Their acceptance, love and support has had a major impact on her life.”

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Back to school: 6 tips to manage IBD at college

Danielle LeavittI’m a 20-year-old rising junior at Harvard University and I have inflammatory bowel disease (IBD).

Growing up in Orlando, Florida, I participated in typical childhood activities and was what you would consider to be a “normal” kid.

But I was dealing with chronic, excruciating abdominal pain, diarrhea and bloody stools. At age 10, doctors diagnosed me with Crohn’s disease.

I went from one hospital visit to another and was prescribed various pills, injections and infusions, all of which failed at some point.

During high school, I was embarrassed to discuss my disease. Very few of my teachers and friends knew I had Crohn’s. I was afraid I wouldn’t be able to manage school assignments, participate in athletics and still have a social life.

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Brave Hearts: How one Mom faces her daughter’s congenital heart disease

Avery and sunsetFinding out your child has congenital heart disease (CHD) can send you on an emotional roller coaster. “You can’t help but think, is this my fault? What did I do wrong?” says Jessica Nigrelli, whose daughter Avery was diagnosed with CHD when she was 16 months old.

When Avery was a baby, she had an on-again, off-again heart murmur that was checked every three months. When the murmur persisted at 16 months, her primary care doctor recommended she see a cardiologist from Boston Children’s Hospital. At the Heart Center’s outpatient clinic in Waltham, Dr. Susan Saleeb discovered Avery’s atrial septal defect (ASD). An ASD is a hole in the wall that separates the heart’s upper two chambers, the left and right atria.

The diagnosis shocked Jessica and spurred a great deal of anxiety. “Avery appeared healthy. Looking at her, you would never know anything was wrong,” Jessica says. The word ‘defect’ just sets off a million bells and alarms in your head. Processing that took some time.”

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