Anniston Bazar became part of our GMA family five years ago when she was about to turn two.
Anniston was diagnosed with Krabbe Disease as an infant, and her family worked hard to bring awareness about the genetic disorder.
In that time, despite being non-mobile and nonverbal, Anniston never let her illness stop her from accomplishing goals.
One of her biggest came in 2016, with the help of her family, she was able to get the Anniston Bazar Act passed in Louisiana. It would make sure that all newborns are tested for Krabbe as part of the newborn screening.
Sadly, in April of 2020, Anniston died from complications with pneumonia caused by Krabbe.
At the same time, her parents, Reesa and Corey, also found out that the Anniston Bazar Act had never been implemented.
They were told that funding was the reason.
Read more: Bazar family continues fight for Krabbe testing in Louisiana
"Her life has truly made a difference and she's going to save other babies," Reesa Bazar said. "It may take us five years or five other years. We will get this passed one day."
"It's hard to fight without her here for it, but in turn, you're helping other kids out," Corey Bazar said.
Today, a new push from Representative Paula Davis to get Pompe and NPS 1 on Louisiana newborn screenings. It is a new recommendation from the CDC and that means a federal grant could be available to get it off the ground.
"Because of that, they are providing some grants to purchase some new machines and things of that nature," Representative Julie Emerson said. "They are the same machines they need to test for Krabbe. The only thing from that point is a reagent solution to put in it to test for Krabbe. That's under a dollar a child, and right now we are around 60 to 65,000 child births a year. You're talking about a very low cost."
Emerson represents District 39 has been working with Reesa and Corey since day one.
Emerson said, while there has been many set back over the years, this grant could be their answer to getting Krabbe on Louisiana newborn screenings.
"When you look at things from a state perspective you don't only look at pure costs; you look at cost benefit," Emerson said. "With this, saving the life of a child, you can't put a price tag on that. Even if you look at it from a standpoint of caring for a child with Krabbe, it makes sense. We want to go ahead and do this so we can save lives and it ultimately saves money in the long run."
For Reesa and Corey, this is new hope that all they and Anniston have worked for may soon become an reality.
"It's kind of an emotional journey right now to know that we started five years ago with her," Reesa said. "And we just wish that she was here to see this go through."
But just like last time, it will take more than just the Bazar Family to get it done.
Like the old saying goes, "It takes a village to raise a child"--it will take a village to enact change.
"That's how Anniston's initial bill went through," Reesa said. "They look at the top three that the community wants pushed forward and that was the number one for that year. That's what got us into being able to share her story in front of the House and Senate. The community made a huge difference in that and that's what we're going to ask for, as well."
It is another hurdle, but one the Bazar's are willing to take to make sure another family dose not have to endure they pain that they did.
Parents will be able to help their children from the start because they know.
If the Anniston Bazar Act is implemented, babies born on January 1st of 2022 will be the first to get tested for Krabbe on newborn screenings.
Illinois, Indiana, Kentucky, Missouri, New York, Ohio, Tennessee, New Jersey and Pennsylvania have added Krabbe disease to their newborn screening panels.
Georgia will add Krabbe disease to newborn screenings on June 1, 2021
If you want to find out more about Krabbe or how you can get involved click the links below:
http://reesabazar.blogspot.com/
https://www.ninds.nih.gov/Disorders/All-Disorders/Krabbe-Disease-Information-Page
To get more information about the Anniston Bazar Act:
reesabazar@gmail.com
For more information on NPS 1 and Pompe:
NPS 1 disorder:
https://rarediseases.info.nih.gov/diseases/7160/nail-patella-syndrome
Pompe Disorder:
https://www.ninds.nih.gov/Disorders/All-Disorders/Pompe-Disease-Information-Page