Young leukodystrophy patients who are seen at the UC Davis Midtown Ambulatory Care Center and UC Davis Medical Center will be getting specially made positioning pillows to make their visits more comfortable, courtesy of a partnership between the UC Davis Leukodystrophy Subspecialty Clinic and the Olivia Kay Foundation.
Leukodystrophies are a group of rare, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves.
The pillows are handmade by the founders of the Olivia Kay Foundation and given to patients for support and comfort during their hospital stay. They are part of the foundation’s “Pillow Project,” which sends pillows to children in hospitals around the country. So far, the foundation has donated 25 pillows to UC Davis pediatric patients and plans to donate more.
UC Davis pediatric neurologist William Benko and his team are in the process of joining the Leukodystrophy Care Network (LCN), a network of children's hospitals around the U.S. that provide a standard of care for patients with a leukodystrophy. During this process, Benko’s team is making connections with a number of groups, including the Olivia Kay Foundation, that work to provide funding and resources to help patients with a leukodystrophy during their hospital visits and at home.
“The Olivia Kay Foundation was kind enough to gift the patients at the UC Davis Leukodystrophy Subspecialty Clinic with positioning pillows from their pillow project,” Benko said. “These are a great addition that will provide extra comfort during the numerous hospital visits that these patients often have.”