The Hamiltons knew nothing about Chiari malformation or syringomyelia five years ago.

The Hamiltons knew nothing about Chiari malformation or syringomyelia five years ago.

But when doctors told Alisa, the mom in the family, that she had both, they became experts in a fairly short time.

"It was diagnosed by accident," said Matt, the dad.

He said his wife was diagnosed when she was pregnant with their third daughter Andersen, now 5 years old.

"When I was diagnosed, I wasn't going to do anything about it," Alisa said.

But she changed her mind when she went for a walk with her daughters and unexpectedly fell to her knees.

According to "The Chiari Book," Chiari is believed to occur when the lower back portion of the brain is formed abnormally, causing it to slowly sink into the spinal cord and block the flow of spinal fluid. Symptoms can be as mild as a slight discomfort when bending forward all the way to becoming paralyzed.

Alisa said she always thought it was normal to feel pain in her head and neck when she went to the restroom or bent forward. She had brain surgery in September 2003 to correct the malformation of her brain. She said she still is considered to have Chiari, but her symptoms have gone away.

Before long, however, she began to notice the symptoms in her daughters.

"I had this motherly gut feeling that something's not right," Alisa said.

Her physician, Dr. Brad Dickson, told her that she should have her children checked for the condition.

"He's our rock," Alisa said of Dr. Dickson. "He's always said from the get-go that it's hereditary."

Kinley, the oldest at 10, and Andersen, the youngest, were diagnosed with Chiari. Peri, 7, "is the lucky one," Alisa said.

"It was a punch in the face when we found out our kids had it," she added.

"It's the worst experience I've ever had to face in my life," said Matt, a Columbus firefighter. "Our family and friends are what have held us together."

Kinley recently returned from the Cleveland Clinic. She turned 10 on Oct. 12 and had brain surgery Oct. 16.

"What a great birthday present," she said.

Now Kinley has a small scar on the back her neck and only has an approximately 10 to 20 percent chance of seeing any symptoms return.

Andersen should be going through the same surgery sometime after the New Year.

Matt and Alisa said now that they know so much about the condition they want to raise awareness about it. They said the knowledge they gained from the American Syringomyelia Alliance Project (ASAP) helped them through a lot of their journey with Chiari.

"I'm going to continue donating to ASAP," Matt said. "I want to give back. I want to pay it forward."

Matt and Alisa said Dr. Mark Luciano at the Cleveland Clinic "was phenomenal." They said he has made a point to perfect treatment for Chiari in his career.

"We want to let everybody know that we can get through this," Matt said. "We truly are blessed."

At dinner, he said, family members routinely thinks of all the blessings they have been given.

"You got to look at the positives instead of the negatives," he said.

The three daughters all attend Highland Park Elementary. They said they all like music and art. Kinley is especially interested in Ohio history and Native American history.

Alisa said teachers from the school visit her daughters to play, learn and think about things other than Chiari.

"They're amazing people," she said.

Matt said his fellow firefighters have been a great support, as well.

The Firefighter Union Hall will be the site of a fundraising event to ease some of the financial burden of treatment for the family. It will be held from 6 to 11 p.m. on Dec. 6 in the union hall, 379 W. Broad St. According to a flyer for the event, it will be an evening of food, fun and drinks.

For more information contact Amy Carlisle at