COLUMBIA — They didn't know it then, but 15 years ago in their basement pottery studio, Chris Heuer and his wife, Amy Lake, created a symbol.
Heuer had always been a potter. Long before his children were born, American Girl approached him to create a small bird whistle for the company's Josephine doll. The arrangement didn't work out, but Heuer decided to continue making them anyway.
He had been selling handmade pottery products at art fairs and thought the small porcelain birds would complement his jewelry collection. Little did he know, years later, they would become a sign of hope for his 10-year-old daughter Helen and the other 65 million people worldwide who are living with epilepsy.
The small bird whistle pendants and other pottery products have become the Purple Bird Project, a business created to help with Helen's expenses as well as raise awareness about epilepsy.
The idea had been in the back of Heuer and Lake's minds for some time. Heuer was still making his porcelain birds for art shows and sold them in a variety of colors, including purple. When he and Lake began brainstorming what they could sell for their cause, he made an important discovery.
"It just struck me one day. I found out that purple is the color of epilepsy, and I was like, 'Hey, I make those little purple birds. That's a neat idea,'" Heuer said.
Together, the family developed a logo, launched a website, and began selling purple pottery products in July. They've had about 50 customers and have raised around $2,000 so far, Lake said.
The collection of products includes two different purple bird pendants, two different whistles and a tile with the Purple Bird logo. Individual donations as little as $1 can be made as well. Heuer and Lake make each item by hand at their pottery studio in their Columbia home.
The early years
Helen had her first three seizures in a public park when she was 1 and soon was diagnosed with epilepsy. Medications were initially successful in controlling her seizures, but when Helen turned 4, the seizures returned in earnest.
"It was only a couple seizures a month in the beginning, but it was in 2008 when we started having them every day," Lake said.
That year Helen was diagnosed with ring chromosome 20 syndrome, a genetic condition that causes seizures, behavioral problems and learning disabilities, according to the Epilepsy Foundation.
Doctors increased her dosages, which caused nausea, lethargy and other side effects. When high doses became counter-productive, Helen's doctors scrambled to find another medication combination that worked, but they were unsuccessful.
Caring for Helen became an around-the-clock job. Heuer and Lake frequently left their work to tend for Helen when she had a seizure at school. They slept on the floor of her bedroom so much they eventually bought a second bed to put next to hers. They traveled to St. Louis, Milwaukee, New York City and Philadelphia because there was no pediatric neurologist in Columbia at the time.
The lifestyle changes they made to care for Helen left little room for careers. Lake, who was working as a project director at the MU School of Medicine's Center for Health Policy, had no choice but to reduce her hours from full time to part time. Heuer cut down his work hours by a quarter, limiting his range of pottery products.
Taking care of their 13-year-old son, Ben, became difficult, too. All the traveling they had to do left Ben without one or both parents for spurts of time. He still has to be pulled out of school for weeks at a time occasionally so that he can travel with his family to one of Helen's many appointments. His life is never stable or consistent, Lake said.
Four years ago, the family became eligible for a private nurse from a state program. Lee Lauer, a nurse, cares for Helen mostly during the night, allowing her parents to get the sleep they need.
Two years ago, Helen also became eligible for an assistant through Boone County Family Resources. Jana Hirtz spends most days with Helen, taking her to school, keeping her entertained and getting her out in the community.
The services of Lauer and Hirtz have had a positive impact on Heuer and Lake's lives, allowing them more time to take care of themselves and their family and to coordinate the Purple Bird Project.
The family is planning a trip to New Mexico on Tuesday to meet with Assistant Dogs of the West and Dogwood Therapy Services to find a service dog for Helen. They are looking for ways to afford a rental car that will fit all four of them, a nurse and a dog.
Through all the seizures, doctors appointments and struggles, the family learned an invaluable lesson that's shared in over-sized purple text on the project website: "You never know what's coming tomorrow, so today is the day to find joy and happiness."
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