COLUMBIA, Ky — As a mother of five, Monica Hare has had quite the handful building her family.
Her youngest son Myles especially keeps her busy, running all over the place as a big ball of energy.
"Myles is a Wildcat. He has so much energy and he’s just excited," Hare said.
The excitement is a welcome sight for Hare because that wasn't always the case for Myles.
Early in the boy's life, he had next to know energy, constantly sick as a baby.
“When he was three months old, he had a fever. We took him to the doctor and they said it was probably a virus, he was negative for everything," Hare said.
"A couple weeks later he had another high fever then he was fine again. You could look at a calendar and say he’s going to have a fever tomorrow and he would. It would be 104-106 degree fevers every time.”
It's been a medical rollercoaster for Myles for about a year and a half.
When a diagnosis was finally made, it led to so many more questions.
About a rare disease not well known in the United States.
“He has Familial Mediterranean Fever which is very common in the Mediterranean but in America it has not been as common so doctors don’t know what it is, they’ve never heard of it," Hare said.
Familial Mediterranean Fevers, or FMF, is a rare autoinflammatory genetic disorder.
According to data from the National Institute of Health, less than 1% of Americans are diagnosed with FMF.
If left untreated, it can lead to organ dysfunction or failure, particularly in the kidneys.
While Myles is now getting regular treatment to help keep his fevers in check, it doesn't take away from the emotional toll his family has felt trying to find out how to take care of him.
“Your child is your life. If they’re sick, nothing else matters," Hare said.
"It was horrible. You just knew he was going to be sick and there was nothing you could do. Nothing.”
Hare wanted to channel all of those feelings somehow.
So she turned to writing which led to publishing her own book.
Hare wrote "Searching for Zebra" to document Myles's story and how it impacted her family while also trying to help other people who may go through a similar struggle.
“In my book I talk about handling doctors visits and how to advocate for yourself," Hare.
"I really feel like we went through what we went through so that we could help other people.”
If you want to check out Searching for Zebra, click here.
If you want to learn more about FMF, click here.
