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By Matthew Santamaria (msantamaria@hdsa.org)

One life event can change you forever. This is what happen to James Del Carpio. His parents are from Peru and both arrived to the United States. James was born and grew up in Queens, New York. However, the marriage would not last as they ended up getting a divorce. James witnessed his father getting physically abusive with his mother.

He would eventually grow up and meet the love of his life, Kelly. James is having a great life as he is also working in the city. However, there was one fact about his life that James would soon realize. In 2014, his cousin from Peru would tell him that his father had Huntington’s disease (HD). Through the years, he thought his father had Parkinson’s disease as the family had no prior knowledge of HD. His life would come in full circle as he would learn more about the disease.

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.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. It can take a person’s ability to walk, talk, and swallow. According to his mother, his father developed signs of the disease including abusive behavior. James noticed slight movements with his father but thought it was only Parkinson’s.

That next year, James wanted to be tested. His wife was along his side as it was a very long day at the clinic. Then, they met with their doctor and would find out that James tested positive for mutated HD gene. This was a very emotional time but he knew that he had to be strong.

At the time, he had three children including Kayla, Alexya, and Skyla. His wife was also pregnant with their fourth child, Mya. James and Kelly know that all four children have a 50/50 chance of inheriting the disease. James would not give up in this moment as he wanted to take action and worked closer to home because he wanted to be near his family in upstate New York and spend as much time with them as he could.

“There’s no known cure for HD, but there is hope,” said James. “As of right now I’m pre-symptomatic, which is the doctors’ way of saying it’s not if, but when I’ll experience these life-changing symptoms. They’ve inspired me to educate others and raise awareness for HD in hopes of finding a cure through social media, fundraising events, and team committees.”

James was inspired to live a healthier lifestyle after going to an HD-Fitness study in Iowa. This study would consists of people who tested positive for the gene and wanted to see if fitness can possibly prolong the disease. Since then, James has fully embraced the healthier lifestyle. This includes a balanced nutrition, clean eating, and daily physical activity. For example, he started the #StopDropandPlank4HD challenge and has an incredible reach on social media.

“I want to encourage others to drop to their forearms in a core-challenging pushup position and share that on social media, as a unique way to raise awareness for HD,” said James. “I took that mission to the Hudson Valley, hosting a live event with ArchCare at Ferncliff in Rhinebeck. It has been amazing to see this challenge grow not just nationally, but also around the world.”

He has also run in several marathons which includes New York City and Philadelphia. This also includes the Team Run HD marathon in Chicago. James wants the ability to control his body and does not want the disease to take over. Every time that he crosses that finish line, it is a moral victory. He wants to be strong for his kids and to show them to never give up.

James is continuing getting involved more in the HD community. He spoke at the Philly Hope HD Walk and Run where he received a certificate of recognition for his dedicated service to the community and HDSA from Senator Sue Serino.

“I had no idea I was going to be honored at the walk! It was so humbling and rewarding to know that I was making a difference.”

James and Kelly have also attended last year’s Huntington’s Disease Society of America (HDSA) Convention in Los Angeles, California. He also served on the HDSA-ArchCare Team Hope Walk – Hudson Valley committee to prepare for the 3rd Annual Walk. Through it all, his family is by his side.

“My HD story is about hope,” he explains. “I’m committed to fighting and prolonging the onset of this disease for myself and others. I share my story with the hope that people who have been diagnosed with HD — or any other fatal disease — will not view it as a death sentence. It’s important to make the days count.”

He continues: “I’m still in control of my body and my mind. One day, HD will take that away from me. But it will never take away my heart or my soul. I have HD, but HD does not have me.”

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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 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.