Today many in the Bowling Green community gathered at Phil Moore Park to support 5 year old Landrey Basham.
Landrey is currently battling a rare form of Leukodystrophy, a condition her family has recently learned is terminal.
When you meet Landrey upon first glance she's as outgoing and energetic as any other 5 year old but she may only take a few steps on her own before falling to her knees and having to crawl the rest of the way.
"It's pretty much robbed us of Landrey's speech. She makes noises with us now. She doesn't walk. She can't feed herself. We've hit a stage in this disease where it will eventually cause a multiple functions failure," says Sandy Guillot, Landrey's Grandmother.
It would be just over three weeks ago, on March 6th, that Nashville doctors would tell them their blue eyed girl would be one of fewer than 50 people to be diagnosed with Multiple Sulfatase Deficiency, a rare form of Leukodystrophy.
"It was the worst day of our life, by far the worst day of our life," says Guillot.
Landrey's condition results in a cross board failure of enzymes that are intended to remove chemicals from the brain, and the family would search for answers long before the diagnosis.
"We probably noticed around 8 or 9 months that she wasn't hitting her milestones as far as sitting up or rolling over or trying to walk or pull up. We went to doctors and were kindly dismissed thinking she was just late or lazy in hitting her milestones," says Guillot.
After many frustrating doctors visits and three years at Kosair they were told they may never know the answers as to why Landrey was not developing.
"And that wasn't acceptable to us at all so we transferred to Vanderbilt and after three months we knew their was a major problem," says Guillot.
They now know the name of Landrey's condition but many questions still go unanswered because the disease is extremely rare.
Now their goal is to raise awareness so more research can be done on Multiple Sulfatase Deficiency.
"Never thought it would be something that would take her from us, and take her from us so horribly," says Guillot.
With no treatment and no cure they are trying to cherish the moments left with Landrey.
The family says they will take each day at a time and just have "love for Landrey."
"We love, we can pray and we can love."
To learn more about Landrey, her condition, and how you can help raise awareness, you can visit her facebook page, "Love for Landrey."