Leslie LeMaire said her life was complete when her daughter, Olivia, was born.
She already had a healthy little boy and now a girl.
"Olivia was--when she was born she hit all of her milestones," LeMaire said. "She walked and talked on time."
But at two years old everything changed.
"She started crawling again, then was just able to sit up, and lost quite a bit," LeMaire explained.
"When I saw what Olivia is going to go through I hit the floor," LeMaire said.
LeMaire said they tried for two years to get answers.
"Infantile Neuroaxonal Dystrophy. I remember the phone call," LeMaire said. "It was December 4th of 2012 when the genetic counselor called me at 5:30 in the evening and told me that Olivia had INAD."
LeMaire said she did the worst thing that should could and googled the disorder.
"When I saw what Olivia is going to go through I hit the floor," LeMaire said. "I was devastated. I told myself, "I can't go through this. I can't watch her die." It's terminal. It's terminal."
Only 25 kids in the United States and 100 worldwide have INAD.
Getting answers was not easy.
"There is no doctor that we can go to that can tell us what to do," LeMaire said. "They usually ask us what we want to do. We rely on other parents to tell us what to do; those that have been through this already. It's a roller coaster ride."
Six years ago, LeMaire came across a diet for Olivia. One that, over the years, has helped her not get worse.
"Three days a week it is organic meats," LeMaire explained. "Beef, deer, wild game, or chicken. She gets wild caught fish and organ meat. The heart, liver, and kidney. We have actually saw her progress...not get worse."
LeMaire was purchasing wild game organs from Texas. She said a friend suggested that she reach out to people on Facebook.
The response was overwhelming.
"I had an oilfield company donate a huge freezer," LeMaire said. "I've had others reach out and want to help more than with the organs. They want to do all they can."
LeMaire's freezers are filled to the brim. She said she will not be able to take anymore meat until February. She said that more kids are in need and there are more opportunities to help.
While this journey has been a long one, LeMaire said it has taught her to be grateful for what you have, the time you have been given, and to use that journey to help others.
You can get in touch with Leslie LeMaire through Facebook.
