Community comes together to support a newborn with rare condition

HARRISBURG, Ark. (KAIT) - A newborn baby in Harrisburg was recently diagnosed with a rare disease that cost the McGinnis family thousands of dollars and many nights in the hospital.

Kailer McGinnis has only been alive for three months, but he has gone through more than most.

“We noticed him getting fussy really bad a couple of months ago, his head started to look a little bigger than usual,” Lance McGinnis said.

Lance is Kailer’s father, and he and his wife decided to take Kailer to the doctor when they noticed the changes.

They were transferred to Lebohner Children’s Hospital in Memphis where they got the news that would change their lives.

“It was a couple of days later they told us he was diagnosed with aqueductal stenosis hydrocephalus,” Lance said.

Aqueductal Stenosis Hydrocephalus is a disease that causes high rates of epilepsy, neurodevelopmental delay, and educational difficulties, which meant Kailer had to have surgery.

After all the procedures, Kailer came out even stronger, but for Lance and the rest of the family, the bill started to pile up. Lance recently started working at the Harrisburg Police Department, and they wanted to step in and help.

The department is cooking Boston Butts and with every purchase, the money goes toward the family which Lance and his wife said means the world to them.

“We are not usually the type to ask for help but when someone is willing to give it to you without us asking it feels pretty amazing,” Lance said.

To order a Boston Butt you can contact Micheal Turner at (870)-202-0024.

Copyright 2023 KAIT. All rights reserved.