'How you are going to handle the test': Jacksonville family copes with fatal diagnosis

Florida Times-Union - 11/9/2020

Kim Cope met future husband Trevor Cope on a Jacksonville soccer field when she was 10 and he was 14. She had been an avid soccer player since age 5 and, on that day, decided to test her mettle by joining the boys' team instead of the girls' team.

"I wanted to prove to myself that girls are strong and belong on the field," she said.

Now 32, Kim Cope calls on that strength every day. In August 2015 she was diagnosed with Huntington's disease, a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain, Over time it affects the ability to reason, walk and speak.

There is currently no cure.

RELATED STORY: Four generations of fatal disease follows family.

"When we found out we were all in disbelief cause my whole life I was active and playing soccer and I was always happy," she said. "I went into a depressed fog."

Huntington's, a hereditary disease, had always hovered over the Copes' lives. It killed her mother at age 35. So in college they got involved with the Huntington’s Disease Society of America -- the Northern Florida affiliate will have a Virtual Team Hope Walk fundraiser Nov. 22 -- to find out more.

"We knew Kim could possibly be HD-positive so we wanted to see what HD looks like and gain some friends with similar situations," said Trevor Cope. "I’m embarrassed to admit that it scared us, we were young and felt invincible."

Kim Cope decided to get tested for Huntington's because of her daughter, now 4. "I wanted to know for my daughter Mariah’s future," she said. "I am praying for a cure for me and Mariah if she were to have it."

The diagnosis was crushing. Trevor Cope remembers being "absolutely numb" and speechless for 30 minutes after he heard the doctor's words.

"Tears were shed and it was very emotional," he said. "The numb feeling didn’t go away for a few weeks after. This is news that will shift your whole reality. It will take time for your heart to heal and a new normal drop into place."

The next week, they heard Christian band For King and Country play at Disney World. The band talked of its lead singer having been diagnosed with a life-threatening disease; his wife came on stage and they sang a song called “Without You.”

"It was very emotional. Trevor … and I started crying at the thought of me leaving this world so early," Kim Cope said. "At the end, the lead singer said he knows God is with him always and it is his test and his testimony. I love that song -- it makes me sad but also gives me hope. I thought God was mad at me, but God has always been there with me even when I got my test results."

She is on medication for a Huntington's-related movement disorder and for anxiety and depression. Earlier she worked with children who had autism but had to retire on disability after she started to fall at work.

Her father has been living with the family since her diagnosis, so she is spending a lot of time with him and her daughter. Cope said she is "OK."

"Everyone is broken at some point in their lives," she said. "It is all about how you are going to handle the test and make it your testimony."

The family remains an active part of the society, having participated in the fundraising walk and support group for years.

The support group, Cope said, is "not all crying. It's a lot of jokes and laughs. I have always felt good after a good laugh. Our group brought me and Trevor closer because laughing is much better than crying."

Jaime Lattin, Florida coordinator of the Team Hope Virtual Walk, said proceeds from the event are crucial to maintain such patient services.

"I am so grateful that every year the community support keeps growing and those facing the challenges of HD are able to continue getting the help that they need,” she said. “By participating in both our small and large events, whether it be in-person or virtual, the connections made are so meaningful and give me so much hope for a future where Huntington's disease no longer exists."

The Cope family remains active but has by necessity slowed down, said Trevor Cope, who is director of Soccer Shots of North Florida, a children's soccer program.

"Takes a little longer to get out of the house, but other than that Kim is the same old super-active person -- going on walks, playing at the playground with our daughter Mariah, hanging out with friends," he said. "Kim will not let this disease define her."

Neither will it define their marriage.

"I believe that every day I get to spend with my wife is a blessing and nobody is promised the time they get to spend on this earth," he said. "We plan to make memories as if we had 100 years together. A positive diagnosis … is not the end of your life, just means every day is more important."

Cope said he is confident a cure is on the horizon and urged the public to support the society, a nonprofit organization that funds community services, education, advocacy and research. He is particularly hopeful about a new drug being developed that can slow Huntington's symptoms.

"We are so, so close," he said.

Beth Reese Cravey: bcravey@jacksonville.com

HUNTINGTON'S DISEASE

In the United States there are about 41,000 people experiencing symptoms of the disease. Every child of a parent with Huntington's has a 50/50 chance of inheriting the faulty gene: At least 200,000 people in this country are at-risk.

Symptoms include personality changes, mood swings and depression; forgetfulness and impaired judgment; unsteady gait and involuntary movements; slurred speech; and difficulty in swallowing and significant weight loss. They usually appear at the ages of 30 to 50 and worsen over a 10- to 25-year period, with most patients ultimately dying of pneumonia, heart failure or other complications.

For more information contact the Huntington’s Disease Society of America at (800) 345-4372 orHDSAinfo@HDSA.org or go to hdsa.org; or contact the Northern Florida Affiliate at (904) 641-7984, hdsa_nfl@yahoo.com or go to northernflorida.hdsa.org.

Source: Huntington’s Disease Society of America

JACKSONVILLE VIRTUAL TEAM HOPE WALK

The event will be 2 p.m.Nov. 22. Registration is free. Because of the COVID-19 pandemic, participants choose their own course -- such as in their driveway, neighborhood or house or on a treadmill -- and solicit donations from family, friends and other supporters. Team Hope, which takes place in 100 cities nationwide, has raised about $14 million since its inception in 2007. To register, donate or get more information, go to northernflorida.hdsa.org/about/2020-jacksonville-team-hope-walk

HUNTINGTON'S DISEASE

Source: Huntington’s Disease Society of America

JACKSONVILLE VIRTUAL TEAM HOPE WALK

This article originally appeared on Florida Times-Union: 'How you are going to handle the test': Jacksonville family copes with fatal diagnosis

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