Shana & Debbie

My parents just got the news from the doctors at Mayo Clinic. I remember that evening in 1985 clearly.  They were devastated.  In the hotel room my dad explained to me what Huntington’s disease was, and what would happen to my mother over the next few years.  He also took a penny and flipped it.  He said, “This reflects your chance of also having Huntington’s one day.”  The coin landed on heads. “Is the disease on heads or tales?” I asked.  “We don’t know,” he said, “but the researchers and doctors are working very hard to find a cure before it even matters.”

In 1993, we had to place her in a nursing home. This was the hardest year of our lives. We all knew it was for the best, but as many have experienced, it is so hard to see your loved one leave.  Even though we visited her several times a week, the house was so empty it was just unbearable.  We both felt as though we had given up.

Nineteen years later, just over one month ago, my beautiful mother passed away.  Her timing was impeccable as she left us just hours before our largest fundraising event of the year: HDSA Re-Prom: A Celebration of Hope.  She was to be the guest of honor at this event, which was her yearly opportunity to leave the nursing home.  Just two weeks before leaving this world, she was able to see the engagement ring on my finger.  In years her eyes never locked on anything, but on the day she was showed the ring her eyes engaged and followed it. We knew she knew my dad and I were going to be taken care of.

Two things have kept me positive and hopeful throughout the years. First, is my amazing father. He kept me involved in as many activities as possible, so that I could have a “normal” childhood.  Since I was 5 years old and my mother was first diagnosed, he always kept me up to date on all of the research, and was very honest with me about my potential fate.  This leads me to the second reassurance I’ve had over the years.  This is the hope I hold in my heart for a cure.  It did not come in time for my mother, but with the amazing advances of today’s researchers, I may never have to see the wrath of this disease again. The Huntington’s Disease Society of America supported my family through all of these tough times, and is now funding the research that will hopefully present a cure.  And THIS is why I give back as much as I can to HDSA.