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By Arlene Evans
When the neurologist gave us the diagnosis in October of 1989,
my heart broke. What my subconscious already knew, my conscious refused to
consider until the reality of his words slapped me in the face. Our youngest
daughter had just been diagnosed with Juvenile Huntington's Disease. This was a
death sentence for our sixteen-year-old daughter. There would be no prom, no
driver's license, no university, no marriage, and no children. All the things
she had wanted for her future were taken away from her that day. There was no
cure or treatment that would save her life.
 Huntington's Disease is an inherited "neuro-degenerative"
genetic brain disorder that impacts approximately 185,000 people in North
America. It causes brain cells to start dying around age thirty. This leads to a
steady deterioration of both mental and physical abilities, eventually resulting
in total incapacitation. There is no treatment, and the disease always proves to
be fatal (usually by the mid-forties). If there was any consolation that day, it
was the doctor's statement that "siblings usually present symptoms at the same
age", which meant that Laura's older sister Andrea would be spared the same
fate. Losing a child is horrendous; losing both your children would be
unbearable!
But
there was hope for Laura. The hope that a cure or treatment would be found
before the disease ravaged her beautiful mind and body, and ultimately take her
young life. As the years rolled by, we watched our once witty and vibrant
daughter slowly and agonizingly lose all cognitive and physical abilities - and
still no treatment to halt or cure the disease had been found. Our oldest
daughter, Andrea, graduated from university and began her adult life. She
started working, dating, and fell in love. In spite of what the neurologist had
stated in 1989, coupled with the fact that she had never shown any symptoms,
Andrea decided to be cautious and have the recently developed predictive test
done in 1996.
Once again our hearts were broken and our lives were
devastated. Andrea tested positive for the gene! The odds of their father
passing along two dramatically different defective genes were astronomical.
Andrea would develop Huntington's Disease in the adult form.
After much soul-searching and counseling, Andrea and Sean
decided that they would become engaged. They were married in June 1998.
 Laura took the news of her sister's diagnosis with a heavy
heart. She loved her sister very much and it pained her to know that Andrea
would also become a victim of this illness. Laura hoped and prayed that a
treatment or cure would be found before it debilitated her sister in the same
way that it had already robbed her of a normal life.
Laura passed away on October 26, 2001, just one month after
her twenty-eighth birthday.
In an effort to make Laura's hope come true, and the hope of
thousands of others worldwide who will suffer the same fate, her parents, Arlene
and Warren Evans of Georgetown, created the Laura's Hope Fund. The fund has been
developed under the umbrella of the Huntington Society of Canada. It is designed
so that 100% of any donations will go to fund research and clinical drug trials for
Huntington's Disease globally.
The Huntington's gene was the first gene identified, therefore
a treatment for this disease is closer to discovery than just about any other
genetic brain disorder. There are a slew of promising treatments waiting for
funding in order to perform clinical trials. Along the way several Huntington's
discoveries have made substantial contributions to the search for cures for
other diseases such as Alzheimer's, Parkinson's, Lou Gehrig's, and even cancer.
For more information on Huntington's Disease or the Laura's
Hope Fund, please visit the corresponding websites at
www.hsc-ca.org and
www.LaurasHope.com
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