By Polly Keary, Editor
Johntiago, two-and-a-half years old, is cranky and tired Thursday afternoon, but the arrival of a visitor is sufficiently interesting to evoke a shy smile. Soon he is showing off his stuffed animal named Elefante, which means “elephant” in Spanish, and laughing over a game of catch with his father.
In every way, he seems like a bright and funny little boy. But he has a struggle most children couldn’t imagine.
The reason that he was tired and cranky Thursday was that, the night before, he’d had about 30 seizures. And in fact, he’s had that many seizures every night for weeks.
Johntiago Arellano has epilepsy, a very serious condition, and in his short life has endured thousands of seizures and one brain surgery, which his parents say they got through with a lot of support from family.
They know, however, that there are many parents without similar support, and in hopes of helping them access resources and help, they are organizing an Epilepsy Walk at Lake Tye Saturday, June 15.
“There is a huge strain on a family and children who suffer from epilepsy that no one could possibly understand if you don’t go through it,” said Kerri Arellano, who with husband Jaime has four children, ages 2 through 20. “We are lucky that our families are very supportive, but not everyone has that.”
One of the most terrible things a family goes through is fear.
Johntiago started having seizures when he was only eight months old, and from that time on, his parents were afraid for his life.
“You have to choose between going to work and being with your child, and you don’t know if your child is going to live or not,” said Kerri.
The child’s siblings are affected by the loss of the attention of their parents, and they, too, have a great deal of fear.
“My son takes care of his younger brother when we have to go to the hospital for two weeks, and they have to get themselves to school,” said Kerri. “And when we are at the hospital, they don’t have anyone helping them with their grief and what’s happening.”
Jaime’s fear was exacerbated by the fact that his brother had severe epilepsy and died of it in Mexico, where Jaime grew up.
And watching a child suffer is agonizing.
One of the ways that doctors can treat some kinds of epilepsy is brain surgery, and they get better results in younger children. So six months ago, Johntiago had brain surgery, and his recovery was difficult.
“That was a horrible time,” said Kerri. “My husband spent hours and days walking him up and down the halls and riding the elevator with him. He didn’t want to be put down.”
Then there are disappointments and setbacks.
Doctors hoped the surgery would cure the toddler. But it didn’t. And medicines that controlled the seizures have become ineffective. The surgery seems to have partially corrected the problem; Johntiago used to have seizures all day long. Then, when a medication worked, he stopped having them altogether. However, the body grows tolerant of medicines and they have to be changed from time to time. Johntiago’s medication lost its efficacy, and now, post-surgery, the seizures have returned, but only at night.
Epilepsy is also financially devastating. Although the family gets assistance from Social Security, Johntiago’s parents earn a quarter of what they did prior to the onset of his condition. That is because his mother quit her job at BECU and his father quit his job as a landscaper. They started their own landscaping business, Allen’s Landscape and Irrigation, so that they could adjust their schedule around hospital and doctor visits.
But it’s hard to hang on to clients when you can’t always guarantee your schedule.
There is hope that the situation may improve.
Johntiago will have another surgery, and that is his best chance for a normal life. So far, his development hasn’t been hampered by his seizures, which is remarkably lucky, his mother said.
Their extended family has helped out a lot, and even the family cat assists; the fluffy grey animal follows after the child and sometimes warns him of an impending seizure.
But it troubles the Arellanos that there are families who have it worse. So even as they struggled to find time to run their business and care for their child, they decided to organize a walk in support of the Epilepsy Foundation Northwest.
“Even though she suffers, my wife works really hard and wants to help. She’s always helping everybody else,” said Jaime, himself a community-minded person who has coached little league soccer for years. “She wants to help other families.”
The Epilepsy Foundation Northwest, according to its mission statement, “leads the fight to stop seizures, find a cure and overcome challenges created by epilepsy.”
The organization, part of the national Epilepsy Foundation, includes among its programs support groups for families, seizure response training, public education, a summer camp, a volunteer and mentor training program, emergency medication assistance and employment transition assistance.
Every year the organization holds a walk on a Saturday in June. Kerri noticed that the closest events last year were in Bellingham and Seattle.
So she wanted to add one for Snohomish County, so that people who wanted to participate didn’t have to drive into the city or an hour and a half north.
She arranged this year’s walk on very short notice, but said that even if they only raise $1,000 or so, it’s a start, and next year she hopes it will be much bigger.
The event takes place Saturday, June 15, and so far donations have already exceeded Kerri’s hopes; about $2,350 has been pledged.
To sign up, or to pledge, visit www.nwrunwalk.org/monroe.
The walk is more than a way to raise money, said Kerri. It’s a way to make something good of their difficult experience.
“I feel like my son is a fighter,” she said. “Us doing this and raising money is how we fight back. I don’t know how to cure epilepsy. But this is something our whole family can do, raise money and raise awareness.”