I thank the gentleman from New Jersey for recognizing me. Mr. Speaker, I rise today in strong support of House Resolution 692, which recognizes this September 2009 as Tay-Sachs Disease Awareness Month. I'm proud to cosponsor this…
I thank the gentleman from New Jersey for recognizing me.
Mr. Speaker, I rise today in strong support of House Resolution 692, which recognizes this September 2009 as Tay-Sachs Disease Awareness Month. I'm proud to cosponsor this resolution, and I commend my friend from Ohio, Senator Sherrod Brown, for spearheading a companion resolution in the Senate.
Tay-Sachs disease is a progressive neurological disorder for which there is no known treatment or cure. The most common form affects infants who appear healthy at birth and seem to develop normally at first, but at around 6 months the symptoms of the disease begin to appear. The baby gradually begins to regress, losing the ability to crawl, turn over, sit, or reach out. Eventually, as paralysis sets in, the child becomes blind, deaf, and unable to swallow. Tragically, few infants born with Tay-Sachs live past the age of 5.
This terrible disease appears most often in families with no prior history because the Tay-Sachs gene can be carried through many generations without being expressed. However, when two carriers of the gene become parents, there is a one-in-four chance that any child they will have will be born with the disease.
While about 1.5 million Americans are carriers of the Tay-Sachs gene, certain populations are much more at risk. About 1 in every 30 American Jews and 1 in 50 Irish Americans is a carrier. French Canadians, Louisiana Cajuns, and Pennsylvania Dutch are also high-risk populations.
It is easy to reduce this terrible disease like Tay-Sachs to statistics, but there is a human story behind statistics that we must not overlook. My wife's son, Joey Deon, was born a happy, healthy baby. There was no warning he would be afflicted by this terrible disease, but at the age of 1, he began to show symptoms.
His mother, like many parents of children with Tay-Sachs, was the first to notice that something was wrong. She sat through many tests and the awful day they were told that Joey had Tay-Sachs. She was forced to watch a once active healthy, happy baby slowly lose sight, hearing, and muscle control.
Joey passed away in his sleep 1 month before his fifth birthday. We were thankful he died peacefully in his sleep shortly after his mother held him and fed him for the last time. Not all deaths from Tay-Sachs are peaceful. Some can be quite long and agonizing.
Mr. Speaker, a simple blood test can identify carriers of Tay-Sachs genes before they have children, but very few people, including those in high-risk populations, are aware of the availability of this test. This critical and relatively inexpensive test can identify carrier couples before the tragedy occurs. It is a test that my own health insurance, incredibly, did not cover, and I had to pay for myself. But it's a test that primary care physicians should be aware of and discuss with high-risk populations.
Raising awareness of this terrible disease is important, but it is critical that we also put words into actions. Millions of Americans suffering from rare diseases like Tay-Sachs, and more common diseases like cancer, stand to benefit from an expanded Federal commitment to stem cell research. We must also continue to increase funding for the National Institutes of Health. Federal support for cutting-edge biomedical research will make treatments and cures for diseases like Tay-Sachs a reality.
Mr. Speaker, I urge my colleagues today to support House Resolution 692 and Tay-Sachs Disease Awareness Month.