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.
MORE FROM NEWSOK
• For more information about the fundraising effort, go to www.glchill.com.
• To read Karlee Chill's blog, go to www.twoplustwoequalshome.blogspot.com.