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 at around three and a half months months 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.
Jaylah’s grandparents hope her story will spread awareness about Krabbe Disease and also encourage Pennsylvania to require testing for it. “If Pennsylvania would have had a law to have Krabbe as part of newborn screening, she could have been up for a cord blood transplant. And you can have a child live almost a normal life,” said Custer.
Jaylah’s grandparents have set up a Facebook page where they document Jaylah’s daily routine. Click here to view.