DARKE COUNTY — On July 16, Ohio Governor John Kasich signed into law House Bill 62 which designates the second week of September as “Krabbe Disease Awareness Week” in Ohio.
Introduced by 84th District Representative Jim Buchy, the legislation unanimously passed both chambers of the General Assembly.
According to the Mayo Clinic, Krabbe (KRAH-bay) Disease is “an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system.” It is classified as one of many leukodystrophy disorders.
Symptoms of the disease develop in babies before six months of age and usually results in death by age two. In older children and adults, the course of the disease can vary greatly.
There’s no cure for Krabbe Disease, and treatment focuses on supportive care. It affects about one in 100,000 people in the United States.
Buchy said, “This legislation will provide the local advocates evidence of the state’s interest in this disease when raising awareness of the disease during that second week of September which correlates with the national association’s efforts.”
The representative said that he was moved to sponsor the legislation following the death of Madison Layton of Jackson Center, daughter of Mike and Chasse Layton, who died of the disease shortly before her second birthday.
“There are a few families in the district that have been impacted by this disease and Madison Layton’s family and friends were the motivation for this legislation,” he said.
“As this bill moved through the legislature it raised awareness in Columbus of this important issue,” Buchy added. “As a result, Senator [Keith] Faber was able to lead the efforts to ensure moving forward that every baby born in Ohio will have the option to be screened for this disease at birth. This is important because catching the disease at birth has the best outcomes for the child.”
For more information on Krabbe Disease, visit the United Leukodystrophy Foundation webpage at http://ulf.org/.