(MMD Newswire) April 14, 2009 -- One day Sawyer Benjamin Sherwood was a bright, active, wildly talented little league player and the next he was having unusual difficulties with vision, headaches and school work. Sawyer was only seven and a half years old when he began getting sick in the fall of 2002. Despite valiant efforts on his parents' part, one year later he was dead.

Sawyer died of a rare illness called adrenoleukodystrophy (ALD) that strikes one in 15,000 boys in childhood and is usually misdiagnosed or goes undetected by medical professionals until the disease is so advanced that chances for treatment or survival are negligible.

Not long after Sawyer passed away in 2003, his mother Janis Sherwood, took her grief and spun it into helping other families with ALD. She founded Fight ALD - Fighting Illness Through Education, an organization established to educate the public and medical professionals on ALD. www.fightald.org.

ALD is a genetic disease that is most often passed on from mothers to sons; mothers and fathers can pass it on to their daughters, who will be carriers. Women have a 50% chance of passing it on but fathers will always pass their X-chromosome to their girls and never to their sons. Without accurate diagnosis, ALD will continue to spread and mystify the medical professionals unfamiliar with the disease and its symptoms.

"ALD is most often a fatal disease but with early diagnosis treatment is possible," says Janis. "The only known treatments at this time are bone marrow or umbilical cord blood transplants, but it must be diagnosed early," she says. The most prevalent misdiagnosis in boys between the ages of 4 and 9 is ADD/ADHD.

Janis adds that it can be diagnosed with simple blood tests, Plasma Total Lipid VLC and Branched Chain Fatty Acids. But because most medical professionals have little to no experience with the disease she says that patients go undiagnosed until it is too late for treatment.

Now Janis Sherwood is taking Fight ALD on the road. Between April and October of this year "ALD Awareness Across America" will be touring the U.S. in an RV to visit Children's Hospitals to present information about diagnosing, treating and testing for Adrenoleukodystrophy.

To learn more about this endeavor or to make a donation check out her website at www.fightald.org. A percentage of the funds raised during her trip will be donated to the Make A Wish Foundation who granted Sawyer's wish in his final weeks.

Contact info:
Janis Sherwood
janis@fightald.org
760-212-5731
www.fightald.org

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