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End of Shift: It Takes a Village — of Caregivers

Monday August 25, 2008
Christine McSherry, RN, and her son Jett.
Christine McSherry, RN, and her son Jett.
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When my son Jett was diagnosed with Duchenne Muscular Dystrophy (DMD) in February 2001, my family went into retreat mode. DMD is the most severe form of muscular dystrophy and affects mostly boys. That weekend, my husband Stephen, our five children, and I holed up in our master bedroom and didn't leave the house.

Stephen and I didn't talk a lot during those two terrible days, but we communicated enough to emerge Monday morning with a powerful conviction: We would explore every option that existed. We would not sit by and watch our son die. We would not listen to the experts, like the cardiologist whose office I fled midway through Jett's first echocardiogram when he casually said, "Once they're past age 10, there's nothing we can do."

After Jett was diagnosed, I expected an emergency-room level of energy to envelop us and a surge of caregivers rushing around to help him and offer me solutions about how to keep him healthy. That didn't happen, so I created my own village of caregivers and supporters. What an amazing, sad, fascinating, hopeful, frustrating, busy, crazy seven years it has been.

Jett is now 12. Although many children with DMD are in wheelchairs by his age, he still can walk about half of the time. He no longer can play sports or climb stairs, but he is still relatively mobile and independent and he loves to fly, travel, and ride snowmobiles.

I left nursing 15 years ago to raise my children, but my RN training has been valuable in so many ways, although truthfully it's something I almost take for granted. My background has helped me assess Jett's mobility, sleep, and other indicators of the disease's progress; figure out strategies to alleviate his symptoms; and sift through mountains of research to find that nugget of gold that might hold promise as a treatment.

My years of nursing have given me the gumption to phone and e-mail the top DMD researchers and clinicians in the world to pick their brains and the knowledge to ask the right questions. My background also has given me the confidence and credibility to start the Jett Foundation, a nonprofit organization that has raised $2 million for research on DMD treatments and a cure. And it helped me forge a relationship with MassGeneral Hospital for Children in Boston, in which the Jett Program for Pediatric Neuromuscular Disorders opened in January. I trace the idea for the program and my philosophy about how to treat DMD back to my career in hospital nursing.

I worked at Boston's New England Medical Center (now called Tufts Medical Center) in the '80s, prior to raising my family. It was the height of the AIDS crisis, and I was becoming increasingly frustrated with the fragmented care AIDS patients were receiving. Although the disease affects many different body systems, hospital departments did not communicate well about these patients. To address this, an infectious disease team was created to make communication a priority.

A disease like DMD involves many different specialties, such as neurology, cardiology, pulmonology, and orthopedics, so coordinated care is critical. But in southern Massachusetts where we live, there was no one place I could take Jett for all of his disparate healthcare needs. I was discouraged by the reactive nature of so much of the care for DMD children. I wanted a multi-front attack on this dreadful disease. I wanted a proactive, aggressive approach — one that didn't wait until symptoms had developed but attempted to ward them off before they reared their ugly heads. As time went on and I networked with more and more DMD families in New England, I realized there was a tremendous need for such a place.

MassGeneral Hospital for Children understood the need for this type of a program as well. Our goal is to save this generation of DMD children by keeping them healthy long enough to see the day when a cure is found.

When I decided to become a nurse, I never in a million years envisioned that my life's work would be saving my own beautiful son. A mother's love coupled with a nurse's training and experience can move mountains.

Christine McSherry, RN, is the president of the Jett Foundation. For more information about the foundation, visit www.jettfoundation.org. To comment, e-mail editorNTL@gannetthg.com.