Local church initiates Purple Day for epilepsy awareness

Matthew Stahlberg, 9, raised awareness of seizures unexpectedly among members of Covenant Church in Kalispell — as well as his own parents.

“About a month and a half ago, my son had a grand mal seizure at church,” Tracey Stahlberg said.

She and her husband, Keith, were up singing when Matthew collapsed in a hallway at the church in the company of his 11-year-old sister. The family was terrified as they rushed him to the hospital.

Over the ensuing weeks, the Stahlbergs learned a lot about epilepsy and seizures from websites and neurologist Dr. Bret Lindsay.

“Dr. Lindsay said seizures happen frequently,” Tracey said. “Ten percent of people have one in their lifetime. They’re often hereditary but neither my husband or my family has had any.”

From the Internet, they learned about Purple Day, an international grassroots effort to increase awareness of epilepsy — a group of disorders of the central nervous system, specifically the brain, characterized by recurrent, unprovoked seizures.

Impacting 50 million people worldwide, the disorder affects more of the population than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. In the United States, 200,000 people receive a diagnosis each year with 45,000 of these under 15.

In support of Matthew, the Covenant Church at 611 Third Ave. E. in Kalispell will host a Purple Day event from 11 a.m. to 1 p.m.  Saturday — international Purple Day. The congregation also encourages people to wear purple on Friday to support other people and families dealing with epilepsy.

Dr. Peter Heyboer of Family Health Care will speak on Saturday. 

“He’ll make a little presentation on what to do if you see a seizure and what it looks like,” Tracey said.

Matthew’s siblings will present statistics and common myths about epilepsy. The family hopes this information bridges the gap in people’s knowledge, sparing them the frightening ordeal that started with Matthew’s seizure in church.

“We were comforted by the Lord,” she said. “But if we can comfort someone else in a situation like us, we want to.”

At the hospital, Matthew had brain imaging with a CT scan and MRI. His brain electrical activity was monitored.

Tracey said tests revealed he had a spike in the frontal lobe of his brain. She said Lindsay suspected Matthew had experienced earlier partial or small seizures that went unrecognized.

“He didn’t want to medicate him based on one incident,” Tracey said.

Some patients never have another event but, about a week later, Matthew had another frightening seizure. She and Keith were getting dressed upstairs when they heard a strange noise like a groan.

“He was in the middle of a seizure,” she said. “He stopped breathing for 65 seconds.”

They rushed him to the hospital again. This time, their neurologist started their son on a low dose of medication, then raised it when he had some “breakthrough” events.

“We did get a second opinion in Seattle,” she said. “We got the same opinion. It’s idiopathic epilepsy where there’s no known cause.”

Since then, Matthew has done well with no seizures and no side effects from the medication.

“For his age group (8-9 and above), his prognosis is really good — 98 percent grow out of it at puberty,” Tracey said.

As she learned more, Tracey realized that, as Lindsay suspected, her son had experienced little seizures when he complained of tingling in his tongue and said his lips felt like they were asleep. She also knows now that she doesn’t necessarily need to take him to the hospital if another seizure happens.

“It’s scary to watch, but it doesn’t damage the brain,” Tracey said. “The heart is still pumping.”

According to the website purpleday.org, a seizure occurs when the brain loses its normal electrical balance. Brain cells misfire, either not firing when they should or firing when they shouldn’t.

The type of seizure depends on how many cells fire and the area of the brain involved. A person having the seizure may experience changes in behavior, consciousness, movement, perception and/or sensations such as Matthew’s tingling tongue and numb lips.

A single seizure does not constitute epilepsy. The disorder can occur at any age, is not contagious, rarely fatal and suffers have the same range of intelligence as the general public.

At the Purple Day website, Tracey learned that the awareness day was founded by another nine year old, Cassidy Megan of Nova Scotia, Canada, with help from her local Epilepsy Association. She chose purple after the international color of lavender, a flower associated with isolation which many with epilepsy and seizure disorders often feel.

Cassidy’s idea was to show people with epilepsy that they are not alone.

Tracey was so impressed by this and other information on the Purple Day website that she was inspired to hold an event in the Flathead Valley.

“My kids and husband and I talked about it,” she said. “If we had  this information, we felt it would have been easier going through the diagnosis.”

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.