Kindness helps family deal with difficulty of Tay-Sachs disease

Stillwater NewsPress - 5/1/2017

April 30--At 6-months-old Jenna was sitting up on her own, laughing and even managed to say "Mama."

But things abruptly took a turn for the worse when the blonde-haired infant started regressing developmentally.

After months of physical therapy failed to yield improvements, testing began until results from a full panel genetic test revealed she had Tay-Sachs disease.

That's when parents Jessica and Jeremy McKinzie learned of the rare, incurable, inherited disorder that was destroying nerve cells in Jenna's brain and would eventually lead to her death within a few years.

"It was the most difficult day of our lives," Jessica wrote on Jenna's Journey Facebook page.

The parents learned through the genetic testing that they were both carriers of a genetic disorder caused by the absence of beta-hexosaminidase (HexA), which was passed onto Jenna.

After the May 17, 2016, diagnosis, Jenna spent the rest of the year traveling from Stillwater to Oklahoma City for multiple doctor appointments each week.

"Snotty noses that most kids could function with would take Jenna down for three days," Jessica said. "Everything inside her is weaker."

Jenna is the only child in Oklahoma and one of about 16 children in the United States with Tay-Sachs disease that they know of, Jessica said.

Jenna started receiving hospice care three days a week in January, the same month she turned 2 years old.

Jessica took a leave of absence as a second-grade teacher at Skyline Elementary to be home with her daughter.

"We want to make sure she is comfortable and loved," Jessica said. "Children with Tay-Sachs disease can go blind, deaf and become paralyzed. I do a lot of touching and singing so she knows we are there."

Jeremy said this experience has brought the entire family closer together.

Jenna's older brothers, Jackson, 9, and Jake, 6, have learned patience and kindness, Jeremy said.

"As a dad, you always want to fix it, but it is something you can't fix and that is pretty hard," Jeremy said.

The family draws strength from family members, God, their church-family, friends and co-workers.

"The support and love that we have felt has been amazing," Jessica said. "Jenna's supporters have been a bright spot in the storm."

Skyline Elementary fifth-graders chose to do a spaghetti dinner fundraiser for Jenna as their legacy project before graduating.

Sherri Buntin, parent of a fifth-grader and co-chair of the fifth-grade graduation committee, said the students are very service oriented and really wanted to help the McKinzie family.

The community and school rallied around them for a fundraiser earlier this month that included 54 gift baskets to bid on that helped raise $7,250.

"It was so amazing to see these kids," Buntin said. "You could tell their hearts were in it. It showed the kids that together they can achieve so much."

Fifth-grade teacher Beth Shell helped coordinate the event along with Buntin.

"Having a child with Tay-Sachs disease creates physical, emotional and financial stress," Shell said. "We wanted to help out, even if it only lessons the burden a little bit."

Jessica's best friend and fellow second-grade teacher Sarah Sturzenbecker said it kills her to see Jessica -- Skyline's site teacher of the year last year -- going through this.

"I want her to know how much everyone loves and supports her and her family," Sturzenbecker said.

Jessica said her family feels that support and believes Jenna has impacted the community for the better.

"I'm hearing from people in the community who say they are hugging their children tighter or that their faith in God has grown," Jessica said. "She (Jenna) is changing lives."

Twitter: @dbittonNP

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If you would like to donate, visit youcaring.com/jenna-mckinzie-584011

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