LOYAL. LOCAL. COMPLETE.
PARIS—On Sept. 24, members of Edgar County’s community will see some of their own on television. Dawn and Timothy Kirby of Paris will be featured on an episode of WEIU’s Being Well series. The episode, taped in June of this year, revolves around the issues of Frontotemporal Dementia (FTD) an illness the couple’s daughter was diagnosed with in February of 2019.
“A lot of people do know us because of our daughters, or because of Kara’s diagnosis,” Dawn Kirby said. “It does my heart good to know that Kara is continuing to do what God wanted her to do, and that is to bring people closer to him…and to bring awareness and a more timely diagnosis than she received.”
At age 29, Kara Kirby Ike’s life was just beginning to take shape. She was a nurse in an Alzheimer’s unit in Paris. She was a wife, sister, daughter and she had just become a mother.
Her mother said it was always Kara’s dream to become a mom, even undergoing invitro fertilization to get pregnant, but after the birth of her son, Carson, Kara was more “going through the motions” than being a mother.
“We found our daughter was becoming irrational and had misplaced emotions,” Kirby explained. “She had a few behavioral issues… but she just wasn’t being our Kara and it was getting worse.”
The new mother began having auditory hallucinations, symptoms of postpartum depression and severe episodes of anxiety and psychosis.
“Dementia and FTD were nowhere on our radar,” Kirby said. “But Kara’s condition only worsened and nothing was working.”
Determined to find a fix for their daughter, the parents refused to give up.
“For a year and a half, every day we woke up thinking ‘today we/they are going to figure out what’s wrong and make Kara better…’ but we went to bed every night defeated,” Kirby said.
After multiple misdiagnoses, Mayo Clinic finally gave the Kirby family a name for the nightmare they were living, dementia. Kirby explained the diagnosis as “not your grandmother’s dementia.”
“When (we got) the behavioral variant FTD (bvFTD) diagnosis finally, (it came with) both devastation and relief…As heartbreaking as the diagnosis was, we knew the monster under the bed had a name,” said Kirby.
FTD is an umbrella term for a group of brain diseases that affect the frontal and temporal lobes of the brain, areas of the brain are associated with personality, behavior and language. In cases of FTD, parts of the frontal and temporal lobes of the brain shrink. Shrinkage in these areas affects individuals in different ways; the most common side effects are seen in personalities.
Individuals with FTD can become socially inappropriate, impulsive or emotionally indifferent. Others lose the ability to properly use language and mobility. What causes these changes and the shrinkage is not known. Genetic changes have been linked to FTD, but more than half of the people with the illness have no family history of dementia.
Devastatingly, FTD has no cure and there’s no way to treat it directly.
For the Kirby family, the diagnosis labeled all of the changes they were seeing in their daughter.
Eventually, Kara lost her ability to perform simple tasks alone. Her ability to eat, bathe and dress herself shifted drastically. By 2021, only two years into the disease, Kara was walking slowly, unable to initiate most tasks and no longer able to verbally communicate.
“Despite it all, we focused on loving and connecting with Kara. I learned that you find new ways to make connections,” Kirby said. “Kara fell asleep every night holding my hand or snuggling with one of us. Holding hands and the I love you sign language became a source of connection (and communication) for Kara.”
Slogans like “love needs no words” became mantras the Kirby family chose to live by every single day.
Kara’s FTD symptoms, including swallowing issues, continued to progress until Jan. 1, 2023 when she took her final breath. She was 33 years old.
The end of Kara’s life did not mark the end of the journey for her family.
“When you’re a parent, especially a mama, I don’t care how old they are, they are still your baby… when they are going through something life-changing, you become very passionate about getting them the help they need,” Kirby explained.
“I’m not gonna say it was easy…it was very difficult, but I remember asking God to just give us answers to what was going on,” Kirby said. “I wanted to do everything I could to make sure that another young mother didn’t go through this…I still want that…We’ve just continually asked God, you know, please just let something good come from this.”
Now, Kirby serves as an ambassador for The Association of Frontotemporal Degeneration (AFTD) for areas in both Illinois and Indiana. She has been a keynote speaker, activist and voice calling for awareness.
In the past month, Kirby has been able to have proclamations recognizing World FTD Awareness Week, Sept. 22-29, by the state of Illinois governor, J.B. Pritzker, and the city of Paris’ mayor, Craig Smith.
It is Kirby’s belief that something good has come from her daughter’s life. Not only did Kara live a beautiful life full of impact in Edgar County, her story and journey continue to touch hearts and raise awareness across the globe today.
One way Kirby plays out her role as an ambassador and “protective mama bear” is by continuing to spread awareness about diseases, like FTD, with community education and events. On Sept. 24, before and during the premiere of the WEIU “Being Well” special, Kirby and the AFTD are hosting a “Food for Thought” event at the Old Glass Shop in Paris.
The evening has more than one purpose, according to Kirby. She hopes the event will spread awareness, raise community support for families and serve as a “family-focused evening” full of activities, like fishing, which Kara enjoyed.
“In all of the difficult moments, it is the simplest moments that I really remember. Those core moments stay with me and I treasure them,” she said.
A portion of all of the sales made from smashburgers that evening will go directly to the association and a variety of AFTD products, like flyers and bracelets, will also be available at the shop.
“It will be a nice opportunity for our community to not only support something that I believe is important but because we never know when something is going to face our families,” Kirby said.
The open-house style event begins at 4 p.m. and continues through the premiere of “Being Well” at 7 p.m. Guests are invited to join the family watching the episode in the shop.
More information on the event, the association and ways to increase awareness on FTD are available on Facebook by searching for the “Food for Thought: Family, Friends, Food, Fishing & FTD Awareness” event organized by Kirby or at www.classy.org/fundraiser/5748874.