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By Matthew Santamaria (msantamaria@hdsa.org)

At the age of twenty-three years old, Alabama native Morgan Gothard has experienced the many high and lows of life. Through it all, this made Morgan more determined to raise awareness for 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.

Morgan grew up with a younger brother, Ryan, and a younger sister, Emma. At an early age, they knew that her grandmother, Diane, was sick but did not know the full extent of her illness.

“At a young age, we did not truly know what HD was, and it felt like it was something that we were not supposed to talk about,” Morgan explains. “All we knew was that we would visit her, and it was very heartbreaking.”

As the children got older, they saw their grandmother’s health progressively worsen and they learned more about symptoms of HD. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

In February of 2014, her grandmother passed away due to complications from HD. Morgan would then learn more about HD and knew her father’s chance of inheriting the disease. 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.

“As a special education teacher, I am constantly analyzing behaviors and matching them with specific disabilities,” said Morgan. “I had seen HD take over someone’s entire body and mind. Now, I had seen HD start to appear in my man... my coach… my father. When I started recognizing cognitive symptoms in my father, I accepted that as dad’s diagnosis day even though he had not truly been tested yet. Now, I was just waiting on the day to truly be told.”

On May 21st, 2018, Morgan went out to lunch with her husband, Matthew, for his birthday. Matthew was turning twenty-five years old. She was joking with Matthew how old he was now as the day was full of laugh and joy.

The laughter and joy would not last for long.

In that same day, Morgan found out that her father was going to be tested for HD. 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.

As Matthew was picking up their lunch at the restaurant, Morgan received texts from her mother saying “its dad”.

Morgan's father tested positive for the gene that causes HD.

“I was numb. I was heartbroken. I was sobbing. I was laid across the table. All I had to whisper were the words “its dad.” As the other people around us gave Matthew the stink eye, he quietly packed up our food, and then he had to carry me out of the restaurant. We were both crying as he carried me to the car, because we knew about the heartbreaking news we were going to receive. There were very little words said on the way to mom and dad’s house. Matthew simply grasping my hand tightly was enough.”

She continues:

“I believe that it is more heartbreaking, because we can visually see a heartbreaking picture of our dad suffering with HD. We all know what it looks like physically and cognitively.”

Morgan’s mother explained to the family that they had been visiting the HDSA Center of Excellence at Vanderbilt University Medical Center for the past few months before her father was tested. This is one of the 47 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program.

“Mom explained to us that there was just too much good going on to bring everyone down,” Morgan explains. “My parents are selfless like that. I had just graduated college and married my Matthew. My brother had just finished his sophomore year of college, and my sister had just graduated valedictorian from high school.”

“We always knew that there was a possibility of our dad having HD, but the second we found out it destroyed every positive and hopeful part in our hearts at one time that he wouldn’t develop the terrible disease that we watched take his mom,” said Emma.

When her grandmother fought HD, the family was on their own because the people around them were not educated about the disease. With her father’s diagnosis, the family is using social media to its advantage to educate others what HD is and why we need a cure. Last May for HD Awareness Month, the family took turns with sharing how HD has affected their life through pictures, family facts, and provoding HD information.

“We participate in HDSA’s Middle Tennessee Education Days,” Morgan explains. “Hearing the latest information on the HD trials makes us feel a sense of hope for a cure. We also love to hear other families share their HD stories. It lets us know that we are not alone in this heartbreaking journey.”

Morgan and her family have participated in HDSA’s Team Hope Walks in Middle Tennessee. The Team Hope Walks is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease.

Their team name is Campbells for a Cure and they will be attending HDSA’s Middle Tennessee Team Hope Walk/5K taking place on Saturday, September 21st, 2019 at Charlie Daniels Park in Mount Juliet, Tennessee.

“Having a sister has always been a special part in my life,” said Emma. “She was there to tell me what shoes to wear with my outfit, there to drive me around, there to talk with me about everything, but most of all God knew I would need a sister to be there with me through this HD battle, and we have become so close since. I couldn’t have gotten through any of this without her. She is so much stronger than she will ever give herself credit for. It is amazing to see her pour into her students, her marriage, and her family. I love her so much. I couldn’t do this without you!”

For more information about the Middle Tennessee Team Hope Walk/5K, click here

“My message to the HD Community is light up the world for HD because most people do not know what it is all about,” Morgan explains. “The more people know, then the more people will feel comfortable around HD families. Knowledge is everything, so educate the world for the good of those who have lost the fight to HD (like my grandmother), are currently suffering with HD (like my father), and those who are at risk (like my siblings and I) for being diagnosed with HD.”

“Because together, we are all stronger than HD.”

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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.