Connect with our region:
By Matthew Santamaria (msantamaria@hdsa.org)

Nobody should suffer pain at a young age. Some people wish for their father to walk them down the aisle in holy matrimony. Your brother will be looking on and seeing you on the happiest day of your life. For 25 year old Ashley Harris, she won’t have her father or oldest brother there to witness this.

Ashley’s father served over 22 years in the Marines. He represented his community and the country proudly. He wanted to retire on his own terms, but he could not do that. He was diagnosed with Huntington’s disease (HD) which forced him to retire from the Marines.

This 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 during their prime working years and has no cure. This would change the course of the family’s life. By a certain point, their mother made the difficult decision to send him to a Veterans nursing home.

“We saw the neurological disease take over our father's body like no children should have to witness,” Ashley explains. “It first caused small, unusual things and then turned to outbursts of anger and violence due to this horrific disease overcoming his brain.”

Ashley and her brothers knew that this disease was genetic and they would have a chance of inheriting it. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

“I, along with my brother, and so many others have to fear the 50/50 chance of going along the same path of mental and physical deterioration just as my father did,” Ashley explains. “We live in a world where now and then when we forget our keys or stutter our speech, we have in the back of our heads, "This could be it. I could have Huntington’s."

“But even more frightening than that, we worry about our siblings being diagnosed with it, and we worry about our future families. We would never want our children or spouse to have to watch their parent or loved one go through that, let alone to pass the disease to our own children.”

In 2011, on October 21st, her father passed away. “It was heart wrenching seeing our strong, incredible father be overtaken by such a tragic disease.”

From then on, the family decided to fight for a cure. After all they went through with their father, they did not want to see someone else taken from this disease. Her oldest brother, Adam, decided to get tested and he was negative. He provided hope for the family but life decided to take a turn.

In 2017, on October 24th, Adam passed away due to a car accident. According to Ashley, he wanted to donate his organs as he wanted to help as many people as he could in life. He did that and wanted to give his brain to Huntington’s research.

“He had been tested before having children and did not have the gene,” said Ashley. “He wanted his brain to help find a cure for this horrible disease any way that it could. He wanted to help all those suffering from HD and their loved ones. Unfortunately, due to the circumstances, his brain was unusable for this purpose.”

After this, she would go head first helping Huntington’s Disease Society of America (HDSA) anyway that she could. Ashley is a HDSA volunteer in Alabama for the Southeast Region. The main reason why she contributes is because of her other older brother. According to Ashley, they both discussed that if one of them had to develop the disease, then they would wish it upon themselves instead of each other.

“He is the primary reason I do so much for HDSA,” said Ashley Harris. “I worry more about him than I do myself. Because of the chance that he has HD, I want to do all I can to make sure there is awareness and funds raised to find a cure. I also do it for our families in case we develop it because I know what it feels like to be on that side of things as well and it is so tragic. And I do it to honor my father and my brother.”

Craig Mayers, Regional Development Manager for the Southeast Region, has praised the work of Ashley in the community as she has taken her passion to the community as well as her skills as a Marketing Manager to bring more awareness to HD.

“She has become a leader amongst the Alabama volunteers,” Craig explains. “She’s a dynamic part of the Walk Committee and Volunteer Board. Ashley’s passion for fighting on behalf of the HD Community is inspirational. It is a privilege to work alongside her and other Alabama HDSA Volunteers.”

She is also the director of the Miles for Memories: A Tribute to Adam Harris. The event was started a month after he passed away in 2017. In his life, Adam was an avid runner. The event has courses which include 1 mile, 3 miles, and 6 miles.

“Volunteering and helping with HDSA has been a blessing to me and has helped in my healing process,” Ashley explains. “Being able to use such tragedy for good brings hope and joy to my heart, and I am very grateful for that. We must continue to spread awareness and raise funds for the families currently suffering and future generations to come – while honoring those who have lost their battle to the disease.”

Ashley continues to raise awareness to the disease as she encourages others to get involved.

“Think about all of the advancements in research, without advocacy and raising of funds a lot of that would not be possible,” said Ashley. “YOU are the one that is going to help bring needed resources to those in need – maybe it’s even for yourself. YOU can tell your story like no one else can. YOU can make a difference. I encourage YOU to get involved and allow something good to come out of your tragedy. It will not only be helpful to others, but it can also bring healing to your own life.”

###

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 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.