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FTD: Beyond the Reflection Part 1

A nurse, bride, wife, and the mother of a baby boy. At 29-years-old, Kara Kirby looked to have it all.

Posted: Oct 30, 2019 6:23 PM
Updated: Nov 1, 2019 12:25 PM

PARIS, Ill. (WTHI) - 60 Minutes brought your attention to Frontotemporal Dementia or FTD in a segment that aired back in May.

The reporter, Bill Whitaker exposed viewers to the fact that not all dementia is Alzheimer's.

FTD is a type of dementia that impacts younger adults in the prime of their life...and few people know about it.

It strips you of who you are.

At this point, it's unclear what causes FTD. What doctors do know is that it attacks parts of the brain that control your personality, your speech, and your behavior.

Currently, there are no treatments for FTD...there's no cure.

After the 60 Minutes story aired, we met a woman from Paris, Illinois who lives with FTD.

A nurse, bride, wife, and the mother of a baby boy. At 29-years-old, Kara Kirby looked to have it all.

Dawn Kirby is Kara's mom. Her full-time caregiver.

LINK | LEARN MORE ABOUT FTD

After Kara had her son, she changed. She wasn't the person her family knew.

"I really want people to understand that if you have a family member who all the sudden their personality, their behaviors change...that's what FTD affects," Dawn said.

Initially, doctors thought Kara was living with postpartum depression. But as the months went by and medications weren't working...her condition got worse.

Kara underwent countless medical tests and evaluations.

Dawn will tell you, it was exhausting.

"I would get up every day just looking for someone to say, oh, she's getting better. She's getting better. But every night going to bed feeling defeated...and that's a horrible place to be," Dawn told us.

After more than a year and a half, doctors diagnosed Kara with FTD.

She's not aware of how sick she is and her mom says that is a blessing. Each day that passes she's reverting back to early childhood.

On the outside, Kara's disease isn't visible. It's her behavior that catches your attention. She has no filter and she does what she wants.

Making pass after pass through the house, she's always on the go...full of energy.

She will seem upbeat, dancing in front of the window. Nothing appears to really bother her.

LINK | MEMORY AND AGING CENTER - FTD 

Kara likes numbers and will quickly tell you she has 14 favorites.

Talking with Kara, she sticks to a strict daily routine and in a conversation, she is very detailed.

"I take all of my pills and then eat breakfast and brush my teeth. Then I usually lay down for a nap after it's been half an hour since I have taken my last drink," Kara told us.

"Pick your battles, there's a lot of different things she does. They don't hurt anything. So don't sweat the small stuff...and you'll learn that." Dawn said.

At this time in her life, her marriage is over and her little boy lives with his father. She loves her son, she just can't care for him.

Her parents put their lives on hold to care for their daughter 24-7, and they say there are good days and bad days.

"Let's enjoy what we have. Let's make those memories. Let's make it count. I'm fueled for my love for my daughter and my family. I gain my strength from my faith in God. I'm a strong Christian and I don't know what I would do without my faith. I'm not in control and when your loved one gets a disease like this....we're not in control of much," Dawn said.

The Kirbys want to bring awareness to FTD. Correct diagnosis is critical.

In part two of this special report - Kara's mom and dad will never give up on their daughter. Find out what gives them strength as they continue on this uncharted journey.

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