Karlee Chill bounces her dark-haired son, Griffin, 2, on her lap as she contemplates what the future might hold for him.
Griffin's twin brother, Logan, died in August of Alpers' syndrome, a rare, progressive disease of the central nervous system, and testing has revealed Griffin has the same genetic mutation.
Though no symptoms have appeared, Karlee and her husband, Jeff, have been told effects of the disease eventually will show up. Even so, the northwest Oklahoma City couple remain optimistic.
“The doctor says it's inevitable, but we pray that it's not and that we will never have to deal with it,” she said. “We try not to be terrified all the time. Every little runny nose … there is that fear.”
Logan appeared to be a healthy child, Karlee Chill said. The first sign of trouble appeared one night in March when he seemed restless in bed. When they went to check on him they noticed some twitching, and it became apparent he was having a seizure.
The seizures continued, and days later he was hospitalized.
Tests were done and medications prescribed, but the seizures continued. In May, Logan was diagnosed with the progressive, neurodevelopmental condition. According to the National Institutes of Health's National Institute of Neurological Disorders and Stroke, the disease is caused by a mutation of one particular gene.
After several more hospitalizations during the spring and summer, Logan died Aug. 21.
Griffin turned 2 on Sept. 29. He has displayed no symptoms, his parents say, other than appearing to be slightly delayed with motor skill development.
One in 100,000
The Neurological Disorders and Stroke Institute says Alpers' occurs about once in every 100,000 births and is passed on by two healthy parents who are carriers of the recessive gene. Children with Alpers' generally don't show symptoms at birth and develop normally for weeks to years before the first symptoms are seen.
That was the case with Logan, his parents said.
“One day he was a perfectly healthy little boy, laughing,” Jeff Chill said. “The next day he was having seizures.”
Most children diagnosed with Alpers' die within the first decade of life. There is no known cure for Alpers' and no known way to slow its progression. Symptoms are managed with medication to make the child more comfortable, but most children who are diagnosed usually do not live through the following year.
“This has definitely been the longest year of our lives,” Karlee Chill said. “It feels like we've kind of missed a whole year of our lives. It's been really, really tough — not just on us but on our family.
“We spent pretty much most of March and April, and all of June and July in pediatric intensive care.”
She and her husband say that they have been buoyed by the support system they have through their church, the churches their parents attend and by their faith in God. They attend Life Church in northwest Oklahoma City.
“I don't understand but I know I'm not going to understand,” Jeff Chill said. “God has a plan and a purpose. We just take it one day at a time and enjoy what we have now, not knowing what the future holds.
“I can't be more proud of Logan and how he fought. He's helped us as parents with his smile and playful attitude.”
Karlee Chill said the biggest worry for the family is the unknown.
There is little in the way of preventive medicine, she said. Griffin is monitored constantly for changes in liver function — one of the ways Alpers' syndrome presents itself — but other than that, it's a matter of waiting.
“We don't want to treat something that isn't a problem yet,” she said.
Finding ways to help
When word began to spread about the diagnosis, and as medical and diagnostic testing expenses mounted, friends of the family sought a way to help with their ongoing and future expenses.
A golf tournament, dinner and auction were held Oct. 22 at The Greens Country Club. The tournament attracted 204 players and there was a waiting list when play began that morning.
The benefit was incredibly successful, said Ainslee Crum, longtime friend and wife of Jeff Chill's boss at The Womble Company, where he works as a windows and door salesman. Another 400-plus people attended the benefit dinner and auction.
“We had over 200 volunteers in planning and carrying out the event, willing to give of their time,” Crum said. “Donations came from all over the country.”
Karlee Chill said her family was amazed. “It was just an unbelievable event,” she said. “We were very blessed by it.”
Karlee Chill is not working outside the home, having left a yearbook sales position with Jostens to care for Logan and Griffin.
The genetic testing and specialized tests required to diagnose Logan's illness “were very expensive,” Karlee Chill said. There also were bills from neurologists and liver specialists, and intensive care doctors. Future expenses that might be required to care for Griffin cannot be estimated.
Crum said donations are continuing to come in, and the Chills will receive a gift of more than $130,000. Through a partnership with the Oklahoma City AMBUCS, donations to assist the Chills are tax-deductible.
• For more information about the fundraising effort, go to www.glchill.com.
• To read Karlee Chill's blog, go to www.twoplustwoequalshome.blogspot.com.