Child lives life of seizures

WASILLA — When Caitlin Racenet tells her parents she wants a dog, it is more than the puppy dream shared by other 3-year-old girls.

Caitlin’s seizures started when she was only 16 months old. She was soon after diagnosed with Tuberous Sclerosis Complex, a rare, noncurable disease causing tumor growth on all her major organs. The tumors covering her brain cause seizures, as many as 30 on a bad day and only six or eight when things are good.

The seizures normally occur when she is sleeping. Her breathing stops and she periodically gasps for air. Her parents have to monitor her full time.

“The convulsion will pull her head down into her chest,” said Caitlin’s mother, Rebecca Racenet. “You have to make sure her hair is out of the way so she doesn’t inhale it when she gasps for air.”

“The worst part,” she continued, “is afterwards she gets a rush of adrenaline, but she has what I call aftershocks. She wants to run, and she gets very mad, but you have to control her or it will happen again.”

Flash of help

The idea of getting Caitlin a dog first came to Rebecca when she was driving home from Anchorage to Wasilla. Every six to eight weeks, Caitlin suffers from periods of more intense seizures as her brain naturally develops. This was one of those periods.

“We had just dropped off her two sisters, and it was only us two in the car. She started having seizures, and I drove straight home to Wasilla. She had six separate seizures that I counted in the hour drive,” recalled Rebecca. “All I could think of was that I wish there was somebody in the back seat to let me know when they were coming.”

That was then Rebecca remembered a show she had seen about ability assistance dogs. She did a quick search and found a company in Ohio called 4 Paws for Ability.

“I was crying the first time I read their home page,” Rebecca said, hearing how dogs have helped children just like Caitlin.

Simple things hard to do

The seizures have taken their toll on the 3-year-old’s nervous system. According to Rebecca, Caitlin has a very low tolerance for sensory stimulation. She does not feed herself because she hates how it feels to eat, and she can’t stand getting dressed in the morning because all clothes are rough on her skin.

“Just going to the grocery store, you can notice the effects. We’ve had to adjust to do things a lot more low key,” says Rebecca. “It’s like walking on egg shells waiting for the next seizure. Today (Thursday) is a very good day, but there are some days when it’s pretty debilitating. All we pretty much do is sit and cuddle because that is what Caitlin wants to do.”

But this doesn’t mean her sprit is broken. As she gets older and understands better what her seizures are, Caitlin becomes even more determined to fight through the pain. Minor attacks don’t outwardly manifest themselves, but it can be seen in her eyes, according to Rebecca.

“You can see this intensity in her eyes, and she will overcompensate with her actions. For example, if she has a seizure on the stairs and you have to help her down, she will go back to the top step and come down on her own after the seizure is over,” said Rebecca.

Canine comfort

4 Paws for Ability trains dogs to provide all kinds of assistance for people of all ages. For Caitlin, a dog would alert her parents when she’s having a seizure, provide comfort before and after and even predict when one is about to occur.

“There are some dogs that can detect the chemical changes before a seizure. When the dog alerts her, Caitlin will know she needs to go to a safe place,” said Rebecca.

The Racenets are also hoping the dog will help her take the 18 chewable tablets and four syringes of medication each day. It will go with her to the hospital and occupational therapist and sit with her through the tests and treatments.

It will distract her from sensory overload and provide a calming presence when Caitlin starts kindergarten in 2011.

The catch: The Racenets have to pay $11,000 of the dog’s training.

Strong bonds

As soon as the family started their fundraising efforts, they quickly found out just how strong their support network is. Family from Vermont to Texas have sent money, and their Facebook group has raised more than $350.

More locally, the Wasilla Curves took Caitlin’s story onto their Giving Wall. Angie Washington, the manager, sold pictures of dogs from 4 Paws for Ability’s website to the members.

She started selling them at $5 each, but people were soon donating up to $100 for one picture.

Asked why she chose this cause, Washington said Rebecca was a member before she had to stay home with her daughter.

“I like to help my members when there’s something going on,” said Washington, “and we have so many women who are so giving.”

With the $1,340 from Curves alone, the Racenets have raised almost $5,000.

Want to help?

To make up the remaining balance, there are two more events planned. On March 19, Dairy Queen in Palmer is donating 10 percent of their profits on everything sold from 5 to 8 p.m. Additionally, Good Shepherd Lutheran Church will host a fundraising dinner and silent auction in Caitlin’s honor on April 25 from 4 to 7 p.m.

People can also donate money directly through the Racenets’ website at www.allforcaitlin.blogspot.com or through 4 Paws for Ability at www.4pawsforability.org.

“I’m hoping the church fundraiser will be our grand finale,” Rebecca said.

Contact Todd. L. Disher at todd.disher@frontiersman.com or 352-2252.