HERMON, Maine (WABI) - "For me, the month of May is awareness month and I will fight to my death to get awareness."
Every day last month Regina Leonard posted something on Facebook about Lyme Disease.
"To get people to acknowledge it."
She knows first hand the havoc the tick-borne illness can cause someone.
"It was three years ago in the fall that I got a call from the teachers that Cooper was not feeling well and he had this random rash all over his body."
"I immediately noticed that he had a rash on his face and he had raccoon eyes and it was all red and blotchy," said Erica Hake, a teacher at Hermon Elementary School.
Cooper was six at the time. His teachers at Hermon Elementary School contacted Regina when they saw the rash and knew something wasn't right.
"My heart sank. I was just really worried about Cooper," said Hake.
"The fact that they caught it and called me meant the world."
Regina immediately took Cooper to walk-in care.
"We literally saw the rash spread before our eyes at the doctor's office. Within eight hours my kid couldn't walk on his own. His hands were curled in like a paraplegic. He stuttered when he spoke. He just screamed and cried in pain and for the next two and a half weeks it was like that. I was really scared. There was a moment I really thought my kid was going to die," said Regina.
"I remember things like waking up in the middle of the night and feeling sick and I remember when I first got it, throwing up in the trash can," said Cooper.
One of the most alarming factors is the Leonards never saw a tick on Cooper.
"Never, ever did I think it was a tick. I didn't find a tick on him. I do tick checks. I thought I was being thorough."
It's been a hard road for Cooper. They were only given two weeks worth of antibiotics. Regina says when their doctor said Coop was cured three years ago and they were still dealing with symptoms, they turned to a doctor in New Hampshire friends of theirs had success with.
"He's a homeopathic but he works in an integrated health facility combined with holistic therapy in order to treat this. I left there completely in tears because I felt like we had answers, I was listened to and that he was going to get some help."
"I think it's just quite devastating and quite unbelievable in this day in age that we don't have a better handle on this," said Constance "Happy" Dickey.
Happy Dickey is an RN and a past president of the non-profit, MaineLyme. She's also had to pay out of pocket for her own Lyme Disease treatment.
"The treatment is treat the patient. If the patient is getting better continue treatment if the patient isn't responding change it up and do something else."
Happy, along with the other members of Maine Lyme, began working to educate others about Lyme and other tick-borne illnesses in 2010. She says while more and more people are becoming aware of the damage ticks can do, many are still not taking critical precautions at a time when the tick population is growing in Maine.
"This is an epidemic. And we need to prevent people, help people prevent illness and we're just not doing it. I shouldn't have to do this. This should be coming from the CDC. This should be part of the doctor's tool box and it's not. It's pretty devastating."
For Regina, she says when she found out her dog, Lionel had Lyme it was easier to treat and cure him than her son. Now, she says they're hoping for a break from the medications and from the bills.
"Not only for Cooper to get a break but for the wallet because it's been really expensive to pay for this out of pocket."
She says it was worth every penny but hopes their story will possibly prevent other families from going down the same road.
"I'd like to gather every single tick and then cover the bucket in gasoline, light it on fire then put some dynamite next to it," said Cooper.