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By Matthew Santamaria (msantamaria@hdsa.org)

Jacksonville Beach, Florida resident Robyn Stuckey’s father, Don, was an Army veteran. He had a successful business as a locksmith. Her fondest memories as a little girl was going on service calls together.

“I don’t know who they were happier to see, me or my dad,” said Robyn.

In 1973, Don had Hodgkin’s disease, a blood cancer that starts in the lymphatic system. He would make numerous trips to the VA hospital until 1975 until that disease was behind him. However, Don would have another battle: 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.

Symptoms began to show quickly for him. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“He was in his early forties had severe chorea, depression, weight loss, and mood swings,” Robyn explains. “HD was not spoken of at that time. No one knew anything about it. It was considered mental illness. I had tried to reach out to see if anything existed in my area. They were just starting up then.”

Robyn would spend her teenage years going to school and assisting with the family business. She was also a caregiver alongside her mother for Don. At the age of 59-years-old, Don passed away due to complications from HD.

“One of the most touching memories I have of my dad is the love he showed to me, that special love between a father and a daughter,” said Robyn. “He loved me so much that in spite of his body being riddled with HD, he walked me down the aisle on my wedding day.”

Robyn and her brother knew the chances of inheriting HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

She would spend twenty-six years working at an automobile dealership; Robyn had two daughters who have success in athletics and college.

Robyn would then start ministering women, started her own clothing ministry, and food pantry at her local church. In 2013, Robyn stepped away from her career after balancing issues.

Before her brother passed away, his dying wish was for Robyn to be tested for HD.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

Her brother tested negative. Less than a year ago, Robyn tested positive at the age of 59 years-old. According to Robyn, her chorea is minimal due to late onset. She has two children and four grandchildren at risk for HD.

She wants to build a better future for them. Robyn wants to build awareness in the Jacksonville area and show others they are not alone in this battle.

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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. Every 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 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

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