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By Matthew Santamaria (msantamaria@hdsa.org)

One of the toughest sports that you can play is soccer. There are people that love nothing more than to step onto that field and play their hearts out. You never want to take away that feeling from someone. For Jacksonville native Kimberly Cope, nobody will take her passion and love away from soccer or life.

Since she was 15 years old, she has been with the love of her life, Trevor. They met on the soccer field where they showed the same passion and love for the game. There was an instant connection like she has never felt before. According to Trevor, he found the love of his life at 15 years old and nobody was going to tell him different or convince him out of it.

“We were the perfect match, we both had the same passion which sparked into a passion for each other,” Kim explains. “In a weird way though I found the perfect husband and we have that fairytale love. I just know we have the real thing. I was the last person to expect it. Trevor is a loving, patient and caring husband and after 14 years of being together I know he will be with me until the end.”

In college, she wanted to help the less fortunate. After she got her BA in psychology, Kim enrolled in graduate school in the field of applied behavioral analysis at the University of North Florida. In her professional career, she has helped children with autism grown in their education.

“Watching kids with autism has been the most interesting and humbling job,” said Kim. “I am thankful for every day I get to positively impact my student’s lives.”

After 28 years, she was living an amazing life with an incredible husband. Her family would grow as they would welcome her daughter Mariah. However, Kim was not feeling right after her pregnancy. She started to be clumsy but her and Trevor didn’t think too much of it. Then, this would continue which resulted in Kim going to the doctor. She would find out that she tested positive for Huntington’s disease (HD).

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. Kim is one of the 5-10% of at risk patients that has tested for the HD gene each year.

“The day I found out I was HD positive was the scariest day of my life,” Kim explains. “It was the first time I saw my dad cry. I had my husband and a baby girl with me. My first thought was that I have to worry about them taking care of me. There was an overwhelming hopelessness that filled the room. We cried for about 30 minutes after Dr. Oguh told us. She was very patient and gave us our space as we tried to process this bomb set off in my life.”

At a young age, she saw her mother pass away from this disease. She was only 46 years old. Her grandfather also had the disease: “I cried for the first couple weeks but with any wound it gets better with time,” said Kim. “I work with kids with autism so I understand how early intervention can help out with anyone going through depression. I started doing therapy as soon as I could. My husband Trevor often says we will never fully heal but we do not have to be miserable. God gave us time together and it would be a shame to waste it.”

For this sad news, it must have been hard on Trevor. He knew at an early age what she might have in her future. Trevor never left.

“He often says he knew at fifteen he found the love of his life and no stupid disease will change that,” Kim explains. “He sees me for who I am inside. HD being a wave of emotions, I can’t lie sometimes I want to run. However he catches me and keeps loving me the way he always has.”

Her biggest fear was for Mariah. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. She is now 4 years old and is treasuring every moment that she has with her mother.

“She is the reason I volunteered to be in the Signal trial study for Huntington’s disease,” said Kim. “My only concern is about her future. I want the next generation to have hope. I want the next generation to not worry about having the mutation and know that there is a cure.”

It took her a couple of weeks but Kim would soon heal as not only family helped her get through this but God as well.

“He has helped me go through this storm and season in my life,” Kim explains. “I was never angry with God when I found out that I had HD. It has made me so much stronger. There is a reason that I am here with this. I wish to be a light in an otherwise dark existence.”

Learning from her father, he decided to fight this head on. Her father told her that there is no crying in life. “He taught me how to fight for what I want and love unconditionally. He showed me how to live for God which is why I have no fear. I love him so much.”

Currently, the couple is very active in the HD Community. Trevor is the director of a youth soccer program called Soccer Shots. The love and passion for soccer will never go away.

“The Copes are phenomenal advocates for the HD Community,” said Craig Mayers, Southeast Regional Development Manager. “They have supported the Team Hope Walks for many years and have raised crucial awareness about HD.”

They hope to one day find a cure so nobody has to go through the difficult stages of the disease.

“Just know everyone has something about them that’s broken and God will not give you any more than you can handle,” said Kim. “I think God puts trials in our lives so we can get closer to him. God loves you and your brokenness.”

Through her experience, she came up with steps with how to deal with HD. This was mainly for her daughter but can be applied to the HD Community:

Step 1: Do not blame God. A lot of people see this as a curse but it has brought me so much closer with him. When you wake up every day, give God thanks for being alive.

Step 2: Live with a purpose, make someone’s life better by smiling and using kind words.

Step 3: Laugh every day because it’s contagious and it’s the best medicine.

Step 4: Think happy thoughts, you are a product of your behavior. Why be sad when you can choose to be happy! Like Poppy! (Trolls reference, parents of young children will understand)

Step 5: Don’t be a victim to this disease. You are fighter like me, so beat the statistics and make a new path.

Step 6: Tell yourself every day you are beautiful and don’t let this disease tell you anything different.

Step 7: Live every day to the fullest.

Step 8: Find something you are passionate about and enjoy the little things.

Step 9: Stay humble appreciate what you have been given.

Step 10: Knowledge is power. With or without HD be a part of a support group. You can make lifelong friends that are affected by 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 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.