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State Representative Jim Buchy
Raising
Awareness of Krabbe Disease
Several months ago I had an opportunity to meet a family in my district
that tragically lost their daughter Maddison before her 2nd
birthday. We all know that there is no acceptable explanation for
losing this precious life and that is why I am working to raise
awareness about Krabbe Disease. I am working for the passage of a
bill that will make the second week of September each year Krabbe
Awareness week in Ohio.
Krabbe disease is a genetic disorder that destroys the protective
coating of nerve cells in the brain and nervous system. Krabbe disease
is caused when a child inherits two copies of a mutated gene — one copy
from each parent. Symptoms that typically show signs include feeding
difficulties, unexplained crying, muscle spams, loss of head control.
These and other symptoms begin to show around six months of age, and
children usually pass away before two years of age. This disease is
devastating and requires awareness so more attention can be directed
towards screening and medical advancements.
We are losing children to a disease that has no known cure. Bone Marrow
Transplant is an option but does not have a track record of success. 1
in 100,000 in the United States gets this terrible disease.
Since I have learned of this horrific disease, I started talking to
doctors and experts with knowledge of Krabbe disease. My goal is to
first raise awareness, and then find ways to effectively combat Krabbe.
The only chance for reducing the harmful effects of this disease is
finding it early.
Naming an awareness week is a step on the right direction; but we need
to work for birth screening that will allow families to find out early
that their child has this disease and it will allow the parents to get
the best medical care for their child at the earliest possible date.
Please give me your opinion on this topic and others in the news this
month by completing an online survey at tinyurl.com/buchymarch2015
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