HUNTSVILLE, Ala. (WHNT) — Lilly Lou Gray is a three-and-a-half-year student at Epworth United Methodist Church Pre School and Kindergarten.
She was born with a rare genetic disorder called Pelizaeus-Merzbacher-Like Disease. It’s a form of Leukodystrophy.
Lilly Lou is certainly not letting that get in her way on this particular day. Today, she’s put her purple walker to the side and is going at it by herself, and with the help of her friends and teacher.
That is no surprise to her parents, Michael and Laura Lee Gray.
“What would my grandmother call it? Moxie? You know something like that. Grit. It’s just unexplainable,” Michael said.
“She just has a really sweet, loving heart even as sassy as she is,” says Laura Lee.
The love of Michael and Laura Lee’s life came on Valentine’s Day. Lilly Lou had been meeting her milestones up until about 18 months, when it came time to walk.
Testing at the pediatrician’s office and neurologist would confirm their intuition.
“Her balance is like she is on a rocking boat,” Michael said.
The genetic disorder throws off Lilly Lou’s depth perception and balance, which causes her to shake during play tasks and head bobbling.
She is a social butterfly with a fighting spirit, and her parents are determined not to let this disease stop her.
When it came time for school, Michael and Laura Lee were thrilled to find Epworth, where she’s found sweet friends.
The Grays take it day by day. Lilly Lou has good days, and her dad says some bad ones, too.
“I say that a lot. I say don’t worry about what you can’t control, but it’s really hard to live with it,” he said.
The disorder is degenerative, which means it could take a turn for the worse on any given day. It is so rare that there are no set timelines, and it gets very little attention and funding in the race to find a cure or even gene therapy.
“They have had some genetic therapies for other types of leukodystrophy, which are game changers, but we just don’t have one for Lilly yet,” Laura Lee said.
“You always know that life is precious, but living in a world where you don’t know what tomorrow is going to bring. Nobody knows, right? But your hand of cards is not as good,” Michael said.
You wouldn’t know it watching Lilly Lou go through life with her independence, spirit, strong will, mobility, kindness, sassiness, intelligence and a smile that melts hearts, all while amazing her teachers and parents.
“She’s got to be my hero. I mean, I’ve just never thought about life like I do now,” her father said.
Epworth and the Gray family are raising money for research at the Children’s Hospital of Philadelphia, where the world’s best doctors specialize in finding a cure or gene therapy for children like Lilly Lou.
If you can join the fight, click here for more details.
And if you have someone in your life you believe is a hero, you can nominate them to be highlighted on Hoover’s Heroes below!
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