A decorative cross by their front doors says “Faith.” A sign hanging over their kitchen stove says “Blessed.”
Neither offers any hint of the daily hurdles Dan and Wendy Atkeson face in raising their six children, two of whom have special needs.
Fifteen-year-old Elijah, who is autistic and suffers from obsessive control disorder, began having seizures at age 2. At age 6, he was diagnosed with Lennox-Gestaut syndrome, a rare genetic sub-type of Doose syndrome that can cause death at any time.
Twelve-year-old Jeremiah also has Doose Syndrome — although with fewer and milder seizures — along with bipolar disorder and developmental delays.
They balance caring for Elijah and Jeremiah with tending to the needs of their other four children: Victoria, Holly, Zach and Misty, whose ages range from 9 to 21.
Says Dan, who soon will be losing his job as a Boeing firefighter due to layoffs: “You have all this, but normal life has got to go on.”
For many, that would be a daunting task. But with the help of Children’s Miracle Network Hospitals at Ascension Via Christi and a cadre of generous co-workers, church friends and neighbors, it’s a road they haven’t had to travel alone.
Wendy home-schools Elijah, who is not predicted to progress beyond age 6 developmentally.
“We’re doing everything we can, but Elijah’s never lasted six months without going downhill again,” says Wendy. “Weeks at a time we lose him; he gets so many tics he regresses and can’t remember where the bathroom is.”
Some medications and treatments have worked better than others.
“It’s all about trying to find that mix of drugs that works,” says Dan.
In addition to a multitude of daily medications to control his seizures, Elijah is on an 18-month regimen of experimental IV treatments that cost $15,000 a week.
He’s also been a frequent patient in the Pediatric Intensive Care Unit at Ascension Via Christi Hospital on St. Francis and since 2003 has made up to eight trips a year with his family to consult with a pediatric neurologist at LeBonheur Children’s Hospital in Memphis.
“We feel very blessed,” says Wendy. “We know that had he not been so aggressive with Elijah’s disorder, he would not be with us today.”
Children’s Miracle Network Hospitals at Ascension Via Christi has helped with the cost of their sons’ medications and the cost of taking Elijah to Memphis up to eight times a year to see the specialist who has been treating him for the past nine years.
Co-workers, church members and neighbors also have been generous, providing unexpected gifts of cash and “even leaving penny banks full of money on our porch.”
They pay that kindness forward by opening their home and hearts to exchange students and other children in need of care and family support — and by making sure that other parents of chronically ill children know about Children’s Medical Network Hospitals.
“With their help, families have less of a burden to carry by themselves, more hope to share with their children and more energy to continue the path before them,” says Wendy.