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Child with Niemann-Pick Disease

Schreiber, Karen P. MS, RN, CS, FNP

AJN, American Journal of Nursing: June 2006 - Volume 106 - Issue 6 - p 51
FEATURES: Art of Nursing

Child with Niemann-Pick Disease, a photograph.

Karen P. Schreiber is a hospice nurse at Pathways Hospice in Palo Alto, CA, and a photographer. Her photographs have appeared in various online and print media.

Art of Nursing is coordinated by Sylvia Foley, senior editor: sfoley@lww.com.

“The child in the photograph, Sophia Herzog Sachs, was born with Niemann-Pick disease type A, an extremely rare lysosomal storage disorder that prevents normal cell metabolism,” Schreiber says. “In September 2003, when Sophia was two and a half years old, her mother (and my neighbor), Karen Herzog, asked me to photograph the family at home for the annual genetics issue of the Forward newspaper. In this shot, Sophia receives acupuncture from Lucy Hu, OMD, LAc, MD (China), while being comforted by her mother, who is holding her, and integrative therapies nurse Deborah Quevado, RN.”

Sophia died on July 25, 2005; she was four years old. During her brief life she drew to her a community of people devoted to her and to seeking a cure for this incurable disease. For more information on Sophia’s Garden Foundation, a nonprofit organization dedicated to fostering collaboration between complementary and traditional health care practices, visit www.sophiasgarden.org.

Copyright © 2006 Wolters Kluwer Health, Inc. All rights reserved.