LAKE COUNTY, Fla. (WOFL FOX 35)
Meet Avery Creese, a little girl who is an angel dealing with some of life's harshest realities.
On the surface, Avery is a happy four-year-old girl, but what you can't see, is the rare chromosomal syndrome that will cap her lifelong mental development at the level of a two or three-year old, according to doctors. Called Phelan-McDermid, her condition entails a lot of different symptoms, one of which is that she is often in her own world, so to speak, and doesn't always interact with others.
But there are moments, such as when she greeted FOX 35's Tracy Jacim with a hug when she first arrived at her home. It's those moments that give father Greg Creese hope. He has become a crusader, fighting the system in honor of all children like his daughter.
"She has a condition that's so rare, that the people at the doctor's office had never heard of the disorder. I had to go online and Google, and when you Google something like Phelan-McDermid syndrome and see all the possibilities that can happen to your kid, it's overwhelming."
And making it even more overwhelming is that this single dad of three, a public relations specialist, makes too much money for Avery to qualify for Medicaid, and Avery's condition doesn't qualify for a Medicaid waiver.
Autism, weak immune system, inability to effectively communicate, a lifetime of assisted care, and still Greg can get no help from the system set up to help. Even her bed needed for her safety cost $15,000, and Avery's medical bills last year were $102,000.
"I make over, I think right now, $26,000 is the ceiling."
So dad has started a petition on Change.org. There were 2,770 signatures at the time we first reported his story, but that number has since grown immensely since. He wants to change the system, so children like Avery get Medicaid aide based on need not family income.
"I think anybody that looks at this can see this is what's right," he says. "Disabled children have the biggest hearts of any people I know...they can't help themselves do it's up to us to help them."