BAYLES LAKE -- Samantha Cox is on a mission to spread awareness of a disease that has affected her family.
Cox's mother, Vicki McCoy, and several other of her family members have Huntington's Disease or have passed away as a result of the disease.
"This disease has been in my family forever, and it keeps getting passed down generation after generation," Cox said. "My grandmother, Fern Amsden, passed away from HD, as well as many aunts, uncles, and cousins, too.
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 ability.
Every child of a parent with HD has a 50/50 chance of inheriting HD. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s Disease, all together.
Cox's mom, Vicki, is 56 years old and has been suffering with symptoms of HD for many years. She used to work as a nurse, years ago, and when she could no longer work anymore, Cox said family "had to fight hard" for her to get disability benefits, in her mid-40s.
"My mom was an amazing nurse, mom, wife, and friend. My mom has a huge heart and cares so much for everyone else," Cox said. "She would give the shirt off her back to anyone. She always wants to buy everyone else dinner or drinks. She always wants everyone else happy. My mom is beautiful and strong."
Among Vicki McCoy's current struggles via Huntington's Disease, according to Cox, is that she is experiencing difficulty thinking and understanding, memory loss and a hard time walking and talking,
"She has involuntary jerking movements, she has a hard time doing everyday basic tasks, along with many other symptoms," Cox said. "As the years go by, her disease and symptoms get worse. It’s sad to see the disease take over. My dad is an amazing primary caregiver and loves my mom so very much."
There is no cure for Huntington's Disease.
"Sometimes people who have HD feel helpless and hopeless because there is no cure. People who are at risk, often don’t get tested for HD, because there’s no cure," Cox said. "We need help raising money and awareness for HD, we need help to find a cure. We hope to raise as much money as possible."
Cox is putting together a charity event that will be held on Saturday, Sept. 7, at Lakeview Country Club to raise money and awareness for Huntington's Disease.
In the morning, there will be a Team Hope Walk, followed by a golf outing.
The walk starts at 8 a.m., and the path is around Lakeview Country Club in Loda. The golfers will tee off at 11 a.m.
Such events will be used to spread awareness of Huntington's Disease, a task that Cox says she feels needs to be done.
"It’s important to start talking about this disease and not being ashamed of it," Cox said. "Most people are embarrassed and don’t like talking about this disease because it’s so horrible and sad. The disease rips people of themselves and their independence. People stare, people ask questions. I’m proud to be talking about this disease and I hope to bring more awareness to it. HD is hard and painful and unfair. HD causes a lot of stress, anxiety and depression among families."
Along with putting together the walk and golf charity event in Loda, Cox is running in the New York City Full Marathon on Nov. 3, 2019, to help raise more money and awareness for HD.
"I’ve been training hard and I run six days a week. I couldn’t be more proud and excited to be running for this cause, that is painful for me and my family. I will be running for my mom, and my family, and everyone who has HD, or to those who are at risk for having HD, and for the caregivers," Cox said.
Despite the hardships, Cox said she and her family have experienced some positive things from the disease.
"Our family is as close as ever, we are strong, we live every single day like it’s our last, and somehow we are hopeful for a cure," Cox said. "Our prayer and faith and trust in God, gets us through our hard days."