May 2009
This edition:
A Tough Kid Battles a Tough Case of Neurofibromatosis
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You would never guess that Conor McManus, age three, with a beaming smile and huge head of hair, has been through hard times. "He's tough," says his mom, Miranda McManus.
"And he loves going to the doctors'. Loves it."
Conor has neurofibromatosis, a genetic disorder that causes tumors to grow along nerves, affecting the development of bones and skin. Diagnosed in childhood, neurofibromatosis, or NF, is an autosomal dominant genetic disorder occurring in one of every 3,500 births. "Fifty percent of the time, it's inherited from a parent who carries the gene, and the other 50 percent it's the result of spontaneous mutation," explains Miranda. "Conor's is a result of spontaneous mutation."
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Dear faculty, Children's Hospital staff and other friends,
As I have been sitting with my mother who is slowing passing away, I have been thinking about the impact she has had on me through the years. My mother has been my mentor, teacher, and friend throughout my life. She has been such an inspiration for me and was always there for my brother, sister and I. My mother taught us during our time in kindergarten because we did not have the money to pay for preschool. She taught us at the age of three what we would later find when we were learning in the fourth grade. She studied with us every day, teaching us to read, to think and to love each other. She was also a very religious woman who was always helping the community through various societies in Hickory, NC. She sang to us on the porch, engendering a love of music. I can still hear her voice as she would sing, "Swing Low Sweet Chariot," and remember her sense of humor as we swung on the front porch swing on a sweaty evening before there was air conditioning.
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MUSC Children's Hospital is facing a number of challenges this spring. Beds have been full, necessitating overnight stays in the emergency room for many admitted patients. Hospital finances are tight, potentially affecting physician and staff morale. The usual challenges are present of delivering high quality medical care to sometimes critically ill children and now... the possibility of swine flu! As a children's hospital, how can we deal with all of these threats? There is no easy answer that fits all circumstances but in my experience, working together as a team and looking within ourselves always beats choosing isolation and blaming others. We can indeed look at these challenges as opportunities to further our collective goals rather than diminish them. Financial challenges that are met now will better prepare us for the future when the overall economy improves. Similarly, promoting and maintaining high levels of service, employee satisfaction and patient satisfaction will position us to be a leader in the future. Let's relish the challenge and work together for our hospital's future!
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Research Could Lead to More Effective Chemotherapy for Neurofibromatosis
Researchers are getting closer to outsmarting one of the most aggressive cell forms in neurofibromatosis (NF)-related tumors.
Through a collaboration with the DCRI, Dr. Mark Slomiany is investigating a way to reduce the chemotherapy-resistance of peripheral nerve sheath tumors (MPNST), NF-related cells that are inherently resistant to treatment.
[read more]
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Information about Swine Flu (H1N1)
Do you have questions about Swine Flu? Do your patients? Here are some resources that can help answer them.
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March is Heart Month
March is heart month... you only have one heart so take care of it by choosing foods which promote heart health (fruits, vegetables, low fat dairy products, lean meats, and whole grains). Balance your energy and calorie needs with exercise to achieve the best weight for health.
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A special thanks to the following individuals for their efforts in putting together Kids Connection each month.
Editor-in-Chief: Bernard L. Maria, MD/MBA
Editorial Assistant: Jennifer Cherock, Trio Solutions, Inc.
Publishers: Brian Dadin, Roxanne Hicks, Trio Solutions, Inc.
Feature Writer: Mary Sue Lawrence
Contributing Writers:
Lyndon Key,
Bernard Maria,
Philip Saul,
John Sanders,
Laura Cousineau,
Mary Joan Oexmann
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