Parents persevere as Canton toddler struggles with rare childhood Alzheimer’s

Parents persevere as Canton toddler struggles with rare childhood Alzheimer’s
At 9 months old KJ was diagnosed with a rare genetic mutation that causes learning delays and hinders walking.

CANTON, OH (WOIO) - A Northeast Ohio child is battling a rare disease known as “Childhood Alzheimer’s.”

Little Karson Ross goes by KJ.

Canton toddler diagnosed with rare 'childhood Alzheimer’s'

His mother Ashley says his sweet personality hid the fact that he was seriously sick until he was 9 months old.

At his checkup, Ross said doctors discovered his spleen was enlarged.

From there, the family went through test after test until KJ was diagnosed with a rare disease called Nieman-Pick.

“It was the worst day of my life,” Ashley said.

Today is Rare Disease Day! Attached is another new video! Thank you for sharing them to raise awareness of Niemann-Pick Disease! To learn more about Rare Disease Day visit https://www.rarediseaseday.org/. #RareDiseaseDay #ShowYourRare #NiemannPick #ASMD #NPC

Posted by National Niemann-Pick Disease Foundation, Inc. on Thursday, February 28, 2019

Nieman-Pick disease is a hereditary genetic mutation that causes learning delays and hinders children from walking.

Ashley said KJ falls a lot because he has poor muscle strength.

Nieman-Pick disease is known as “childhood Alzheimer’s" because it can also come with memory loss.

KJ doesn’t seem to experience that yet.

Ashley said KJ’s small for his age, likely because the disease stunts growth.

“He’s very, very speech delayed,” she said.

Ashley and her husband take turns taking KJ to Chicago every other week, where doctors put him to sleep to administer an experimental drug.

“I leave the room before they do it,” his dad Matt said. “I can’t watch it.”

Meanwhile, KJ’s older brother and sister are in school at Our Lady of Peace Catholic School.

They want to see him in the halls one day too.

“We just want him to be healthy,” Matt said.

The church that runs the school has been donating to help pay for KJ’s treatment.

If you’d like to help, the family set up a GoFundMe page.

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