Mt. Vernon woman joins study to combat 'one in a million' diagno - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

Mt. Vernon woman joins study to combat 'one in a million' diagnosis

Lacey Copple and husband Jamie are enjoying every day they have together as a dire genetic diagnosis means Lacey's life has an expiration date.  (Photo courtesy: Lacey Copple) Lacey Copple and husband Jamie are enjoying every day they have together as a dire genetic diagnosis means Lacey's life has an expiration date. (Photo courtesy: Lacey Copple)
Lacey Copple is taking part in a study to learn more about genetic prion diseases like Creutzfeldt-Jakob disease. (Photo courtesy: Lacey Copple) Lacey Copple is taking part in a study to learn more about genetic prion diseases like Creutzfeldt-Jakob disease. (Photo courtesy: Lacey Copple)
Lacey's father (pictured), aunt, and likely grandmother all died from genetic Creutzfeldt-Jakob disease. (Photo courtesy: Lacey Copple) Lacey's father (pictured), aunt, and likely grandmother all died from genetic Creutzfeldt-Jakob disease. (Photo courtesy: Lacey Copple)
MT. VERNON, IL (KFVS) -

A Mount Vernon, Illinois woman refuses to let a dire diagnosis of a rare, always fatal genetic disorder let her down.

Lacey Copple is determined to do what she can in whatever time she has left.

"It kind of changes your outlook on life whenever you start thinking this could be my last time to do this," said Copple. 

Copple said she lives for the day and doesn't dwell on the past. Though in her case it would be easy to dwell. Her family photos are filled with not just memories, but reminders that her life has an expiration date. 

"My dad was 68. When my aunt passed away she was 58," said Copple. "There's no rhyme or reason when someone's going to go."

Copple said her family also suspects her grandmother, who died young, suffered a similar fate. 

"A lot of them say she went crazy, which CJD can cause you to see hallucinations - you go into a coma, stop recognizing your family so those kinds of things add up," said Copple. 

Creutzfeldt Jakob Disease is a neurodegenerative brain disorder for which there is no treatment or cure. 

"It affects one in a million people," said Copple. "It's kind of like Alzheimer's on steroids the way it affects the brain."

Earlier this year, genetic testing confirmed that Copple, like her father, aunt, and likely grandmother before her, is one of the one-in-a-million people who will at some point suffer from the rare and always fatal brain disorder.

"Typically it starts around 40, 50, 60, retirement age," said Copple. "I am 35 now so I've got a bit of time left, but once the symptoms show there's really thing they can do."

Once she learned the test results, Copple said she had two choices.

"You can sit around and mope and cry, or you can live your life and do something about it," said Copple.

Copple picked the latter. She signed up to take part in a joint study between Harvard Medical and Massachusetts General Hospital in Boston. Researchers there are hoping to learn more about CJD and other genetic prion diseases which are to date little understood.

"I don't know that they'll find a cure in my lifetime, but they may find a cure for someone in my family later. So, in a way it gives me a purpose to do something with it," said Copple.

Copple traveled to Boston in November and underwent a series of tests.

"They're taking our blood, and spinal fluid and checking our cognitive abilities," Copple said.

She will go back for a second round of tests in January with her husband at her side. Jamie Copple knew his wife was one in a million long before her diagnosis.

"I see her the same no matter what. She's my wife and that doesn't change," said Jamie Copple. "The fact that I know that she could possibly pass away from this is disturbing, but to me, we go with tomorrow. It's one day at a time. We live the same as we did before – we might live a little better. a little more than we would have otherwise."

Lacey Copple admitted she sometimes gets down about her diagnosis; but not for long. She said she is determined to enjoy every moment of every day she has left.

"I could wake up tomorrow showing symptoms," said Copple. "I could go until I'm 65. Every day is a new day... Just live life to the fullest."

If you would like to support Lacey Copple on her journey to find a cure, the couple has set up a GoFundMe account

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