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Daily Journal
     April 17, 2020      #40-108 KDJ
 
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Hayley, Keaton and Chris Borchardt are wearing shirts made up for Keaton's battle. On the front it says "tay-Sachs warrior." The back says #Keatonstrong.

Courtesy the Borchardt family

Bourbonnais couple's daughter battles rare

By Jeff Bonty
jbonty@daily-journal.com


BOURBONNAIS — Keaton Borchardt is a happy 19-month-old.

Her parents, Hayley, and Chris Borchardt, of Bourbonnais, say Keaton loves all things Disney. Before the COVID-19 pandemic swept across the United States, they planned on traveling to Disney World later this year. They hope to still be able to make the trek to Florida.

“We are trying to make her happy and as normal as possible,” Chris said.

Time is of the essence for Keaton as she was recently diagnosed with Tay-Sachs disease, a rare genetic disorder that is passed from parents to their children. It occurs in a child when he or she inherits the gene from both parents.

Tay-Sachs is caused by the absence of an enzyme that helps break down fatty substances which then build up to toxic levels in the child's brain and affect the function of the nerve cells. As the disease progresses, the child loses muscle control. Eventually, this leads to blindness, paralysis and death.

An infant usually begins showing symptoms by about 6 months of age.

The young couple — Chris is 20 and Hayley is 19 — noticed signs that something wasn't right with Keaton around the time of her first birthday. She was not crawling, standing or walking. She was startled by loud noises. They worked with doctors to figure out why Keaton wasn't hitting milestones. When Keaton began suffering seizures, that's when they began going to a children's hospital in Chicago.

Eventually, Keaton's troubles had a name — Tay-Sachs. The diagnosis came while Chris was deployed. An Army Reserve member, his unit was deployed to the Middle East last August around the time Hayley took Keaton to a neurologist.

“It was hard with Chris not here when Keaton was diagnosed,” Hayley said.

But fortunately, Chris was given leave and came home to be with his family shortly after the news was received. 

"I was asking why this is happening. When Chris finally got here, I was able to let things sink in. I tried to understand. She was here for a reason. This will help make people aware of rare diseases.”

Hayley had to stop working to care full time for Keaton.

Chris has learned all he can about the disease. He knows Keaton could live to 4 years of age, but the average life span is 2.

When Chris returned home, he started a job as a corrections officer at Jerome Combs Detention Center in Kankakee.

Chris said his fellow employees as well and people in his Army Unit have been supportive and helped by donating to a fund set up to cover the family’s expenses for Keaton’s care.

The family, which includes Keaton’s grandparents — Samantha and Kris Knauth and Janet and William Borchardt Sr. — will be hosting a fundraiser Saturday, June 13, at the Knights of Columbus, depending on coronavirus-19 restrictions in place. 

Hayley wrote in a Facebook post announcing the event: “Keaton is the brightest light in any room and she will always make you smile no matter what mood you are in. She loves all things Disney princess (especially Tiana), ice cream, and, of course, snuggles."

Chris said Keaton has his smile, and Hayley says she has her attitude.

The couple met while attending Bradley-Bourbonnais Community High School. They married in February 2018.

They have been through a lot in two years, and Hayley said it has made her tougher.

"It's taught me how to be more open with my feelings. I was closed off,” Hayley said. “It makes me see the bright and be more positive.”

Keaton Borchardt fundraiser

When: 3 p.m. Saturday, June 13

Where: Knights of Columbus, 187 S. Indiana Ave, Kankakee

What: Chris and Hayley Borchardt are raising money to offset costs for their 19-month-old daughter, Keaton, who has Tay-Sachs disease. This is a rare, hereditary disorder that destroys nerve cells in the brain and spinal cord and is fatal in infants. 

Tay-Sachs disease

Tay-Sachs disease is a rare, hereditary disorder that destroys nerve cells in the brain and spinal cord and is fatal in infants. 

Tay-Sachs disease is a rare disorder passed from parents to child. It's caused by the absence of an enzyme that helps break down fatty substances.

Discovery

The disease is named for Warren Tay (1843-1927), a British ophthalmologist who in 1881 described a patient with a cherry-red spot on the retina of the eye.

It is also named for Bernard Sachs (1858-1944), a New York neurologist whose work several years later provided the first description of the cellular changes in Tay-Sachs disease. Dr. Sachs also recognized the familial nature of the disorder, and, by observing numerous cases.

Symptoms

In the most common form, an infant usually begins showing symptoms by about 6 months of age. Signs and symptoms of Tay-Sachs disease can include the following:

• Loss of motor skills, including turning over, crawling and sitting up

• Exaggerated reactions when the baby hears loud noises

• Seizures

• Vision and hearing loss

• "Cherry-red" spots in the eyes

• Muscle weakness

• Movement problems

Source: mayoclinic.org, www.ntsad.org

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Jeff Bonty
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