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Four
years ago I met my husband, Courtney, who was working at a local bike
shop. One night we were hanging out at the bike shop and he began talking
about his mom, Sandy Lee. She had passed away in 1997 from complications
of Huntington’s disease. I didn’t really know what it was
or that Courtney was at risk to inherit the disease. After dating awhile,
Courtney talked about being tested for the disease. I learned that Huntington’s
disease is a progressively degenerative brain disorder that affects the
individual's ability to walk, talk and think. I also learned that every
child of a parent with HD had a 50/50 chance of inheriting the disease,
like the flip of a coin. As we drove home that evening I felt scared and
helpless. Individuals with HD can show symptoms at different ages. It
has to do with the length of the DNA strand that carries the Huntington’s
gene. The longer the strand the earlier a person will show symptoms. The
shorter the strand, the later the symptoms will occur. This is the reason
some people show symptoms in their twenties and some as late as in their
seventies. The average age is between 30 and 50 and will progressively
worsen over a 10 to 25 year period. There is NO known cure or effective
treatment for slowing down the deadly progression of HD. It was scary
to think that this might be the fate of Courtney. Blood was drawn and
his results would be revealed in a week. We sat and talked with the doctor
to answer any questions we may have. I did have one question. If Courtney
didn’t have the Huntington’s gene could it still be passed
on to our children? The doctor explained that HD does not skip generations.
If he does not inherit the gene, then he cannot pass it on. That night,
I remember telling Courtney that I would always be there, whatever the
outcome of his test. The last meeting was a very emotional time. I didn’t
know what to think. We sat down in the doctor’s office and he asked
us if we were ready to hear the results. He looked at us and said, “With
99.9% accuracy you do NOT have the gene!” We were so stunned the
doctor had to repeat it before anyone moved. Words cannot express the
joy and relief we felt at that moment. As we drove home that evening we
talked about how we needed to do something for Huntington’s. We
didn’t know what; we just wanted to get involved. Three years later,
my first year racing as a Professional Mountain biker and an Xterra triathlete,
we received a phone call from my sister-in-law. She had turned 18 and
wanted to be tested for the Huntington’s gene. She went through
the same three-month process we had gone through previously. We found
out that my sister-in-law carried the gene. I was heartbroken. She was
so young to be burdened with this insidious disease. That day Courtney
and I went for a bike ride to clear our heads. We came up with the idea
to start a charity of our own, to benefit research to find a cure for
Huntington’s disease. As a professional
racer I wanted to race for a reason. I wanted to make
a difference and I hoped to help my sister-in-law. I felt that I could
have a voice to educate people about this disease and raise money along
the way for research. We have begun to have raffles, we will put on races
to raise money and hopefully get my sponsors involved. We plan to donate
my charity’s funds to the doctors with the most advanced research.
We decided to name our charity “Jamie’s
Race for Research.” It seems appropriate since we
are determined to find a cure before my sister-in-law begins to show symptoms.
Sandy Lee before HD
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