Three Harrisburg Pizza Huts will be hosting a benefit day on March 10th to raise awareness of Krabbe disease through Jaylah Donaire-Bechtel’s story.
To help Jaylah’s family with medical costs during their time left with her, a percentage of the March 10th sales will be donated to her.
Devonshire Heights off of Route 22 / Devonshire Road
Derry Street in Harrisburg
Jaylah was born with Krabbe disease. Recently, Jaylah’s grandparents, along with many families before have presented the idea of testing at birth and the bill has been passed by Congress to start mandatory screening for newborns for Krabbe disease. Krabbe is a type of Leukodystrophy and affects one in every 100,000 births worldwide; babies born with Krabbe appear healthy and show no signs of having the disease until around 3-6 months old. If Krabbe is left untreated, it will become terminal. With testing at birth, a child with Krabbe receives treatment that will enable them to live a fairly typical life. Other than Pennsylvania, New York is the only state testing for Krabbe disease.
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Like a lot of little girls Jaylah loves chapstick and getting her nails painted. But, unlike most kids Jaylah will never crawl, walk or experience many of the things we do in life.
“I think people need to be aware of how severe this disease is. Imagine you want to plan your child’s graduation, while we’re planning a funeral. I mean that is like the hardest thing,” said Jaylah’s grandmother Angel Custer.
Custer said Jaylah was born healthy, but when she was three months old her grandparents noticed she stopped smiling. “We noticed there was something wrong. Jaylah wasn’t meeting milestones, she wasn’t holding her head up,” said Custer.
Doctors diagnosed Jaylah with Krabbe Disease. It is a hereditary disease that causes severe and rapid deterioration of mental and motor function, generally fed through a tube. Children lose mental and motor function, become deaf and blind, unable to move or speak.’
“Anytime you move her she has spasms,” said Custer. Jaylah requires many different treatments throughout the day and around-the-clock care. “She gets five feedings a day throughout the day. They start out at 8 o‘clock in the morning along with a first set of medicines that come along with it. The first round is at 8. Her feeds runs an hour-long, her burp lasts about a half hour-long. Around 11 o’clock she will start what we call her vest treatments. She gets a nebulizer and a vest that gives her like a shake down to loosen up everything inside. She cannot swallow so she requires suction. This runs even throughout the night that she requires constant suction. So sleep for us sometimes you will see us. We got bags but I don’t think you will ever hear us complain too much because it’s for Jaylah,” said Custer.
Jaylah’s grandparents work opposite shifts to give her constant care.