The Union Recorder

July 18, 2012

Local family raising awareness of little known fatal disease

From staff reports
The Union-Recorder

MILLEDGEVILLE — A local family is organizing an event next month to raise awareness of a little known, fatal disease in memory of a very special toddler.

Kody Hammel was born with menkes, a very rare disease known to have no cure — having lost his battle in 2008 after a mere 27 months. His mother Tara Husum and family are encouraging the community to learn about and help bring awareness to Menkes disease during an upcoming family, fun-filled event.

Menkes disease is a fatal illness in which the intestines are unable to absorb copper, depriving the brain and other tissues of this essential mineral, states the Menkes Foundation web site. This disease is also known as Menkes Kinky Hair disease and Menkes syndrome. The disease occurs in 1 in 100,000 to 250,000 live births, primarily affecting male infants. To date, there is no cure for Menkes, other than treating the symptoms with palliative care, with death usually occurring within the first decade of life.

As a benefit for the Menkes Foundation, the fundraiser is scheduled to kickoff at 8 a.m. Saturday, Aug. 4 at the New Beginning Worship Center, located at 200 Southside Dr. SE. Information packets on the disease will be given out as representatives from the Menkes Foundation and families across the country fighting Menkes share personal stories.

The entire family will be able to enjoy music provided by local radio stations, an informative slide show presentation, face painting, a bounce house, a balloon artist’s creations, home-baked goods, and have chances to win three $100 Walmart and Kroger giftcards through a raffle drawing, costing $2 per ticket.

Items from local businesses will be up for auction, including movie passes, gift baskets, and restaurant, salon and car wash discounts.

A yard sale will also be set up at which individuals are welcome to donate items to or even set up their own table of merchandise for the cost of $5.

For more information about the event, to donate funds or supplies, purchase raffle tickets in advance, or reserve a space as a vendor by the Thursday, Aug. 2 deadline, call Boni Lindsey, Kody’s grandmother and event coordinator, at (478) 457-7824.

To learn more about the signs and symptoms of Menkes disease, visit www.themenkesfoundation.org.



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