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By Matthew Santamaria (msantamaria@hdsa.org)

Ashley Jacoutot was on a mission to find out why her father removed himself from her life. She was not ready for what she would learn next.

At the age of seventeen years old, she was determined to know the answer. Once she found his address on a torn piece of paper, Ashley got in her car and drove more than two hours north of her house to find him.

“He wasn’t home when I arrived, but I decided to search the local pubs, as his neighbor told me that is where he might be,” she explains. “I was not even old enough to enter this bar, but I was on a mission. So I entered as such.”

She looked across the room and saw her father. He immediately cried but Ashley realized there was something wrong with her father. According to Ashley, he appeared to be intoxicated but there was more that was not right with him.

“His body was twitching and jerking, he could hardly speak, and he was NOT ok,” Ashley explains. “I knew my Dad was sick, but I didn’t know why. After researching history and speaking to relatives, I learned that he had Huntington’s disease (HD).”

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

“Google immediately became my best friend and my worst enemy,” said Ashley. “So much to learn. Too much to handle. And there it was. The words that changed my life forever.”

Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

She only visited her father a couple more times before he passed way.

“This time it was forever.”

At the age of twenty-nine years old, Ashley decided to be tested for the disease as she felt not knowing was worse than facing the fact that HD could be her new reality. Each year, 5-10% of at risk patients are tested.

This is a difficult choice for those who are at-risk. There are some people that see no benefit in knowing, while others want to know so they can make informed choices about their future. There is no “right” answer as the decision is intensely personal.

Ashley tested positive.

“My life has never been the same since that day they read the results to me,” said Ashley. “Looking back, I don’t think it was the wisest of decisions. It took me to a dark place full of fear and anger. Everything I could find online was in black and white. Terminal. No Cure. A part of me died that day and for the next few years, I didn’t know who I was or who I was going to become. I was just waiting for the HD to take over. Not living. Just waiting.”

Through this, she took time for self-reflection. She realized how important HOPE is.

“A simple, four letter word that we use every day, as if it is just an average word,” said Ashley. “I had used this word almost every single day and didn’t realize that HOPE was indeed the strongest, most powerful thing I have encountered in this life of mine.”

She continues:

“HOPE is what drives us to get up every day. HOPE is what keeps our minds and souls from accepting the darkest of fates. HOPE is this tiny little word that makes life worth fighting for.”

A powerful word for the HD Community that shows to never give up and to always keep fighting. This is exactly what Ashley is doing. She is following the gene silencing trials. For the past year, she has taken part in the Signal Clinical Trial.

The trial is designed for HD patients who are in early progression of HD or have not yet been diagnosed. The study drug is an antibody medication that is hoping to decrease the inflammation in the brain which would slow down the symptoms of HD.

“It just takes one thing to keep our hope alive. One successful, clinical trial. One breakthrough. One miracle. Just one ray of HOPE is all we need to make the fight worth fighting.”

Ashley has a message for the HD Community:

“For the first time since my testing, I’m HOPEFUL for a cure and the chance to life a life that isn’t taken over by this devastating disease. I ask all of you, please share the HOPE any chance you get. To loved ones, to strangers. To the healthy and the ill. HOPE is sometimes all we have left and sometimes a simple word of encouragement can restore ones will to survive.”

“My name is Ashley. I am an HD warrior but I HOPE to one day be an HD survivor.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org