The 12-year-old Howland resident, who’s being treated at Akron Children’s Hospital for Bartter’s syndrome, a rare and incurable kidney disease, and his parents were treated to the latest “Pilot for a Day” experience at the Youngstown Air Reserve Station.
Pilot for a Day is a partnership between Akron Children’s Hospital Mahoning Valley and the YARS Base Community Council.
“Ethan was extremely excited in the days leading up to it. He just couldn’t sleep, and he would count down the days. ‘Is it tomorrow? Is it tomorrow?’” his mother, Lilia, said. “He woke up early that morning, and was shaking and excited. A bunch of people met us at the base in uniform, and right from the start they made Ethan feel like a very important person. It was like a Disney World day.”
Since June 2000, the Pilot for a Day program has given 62 children with chronic or life-threatening illnesses an opportunity to meet Reservists and receive a VIP, behind-the-scenes air base experience.
“It brought me to tears to see how well they treated my son,” Lilia said. “It gave him such a boost of energy, and I was so proud to see him be all polite and introducing himself to everybody there. And best yet, he didn’t complain about his pain all day.”
Ethan suffers daily from stomach pain, dizziness, nausea and headaches, chronic conditions his mother compares to how cancer patients react to chemotherapy. He takes large doses of medications, is on a special diet and visits the hospital nearly every 2 weeks to see a kidney specialist, other specialists or for lab work.
“His life depends on medications and the treatments he receives, and he’s such a champ who’s learned to live with his condition as best as he can,” Lilia said. “He plays golf and soccer, and enjoys trips to the zoo. We try to help him live as normal a childhood as he can, and the Pilot for a Day experience was so wonderful for him. It took his stress away, and he became one of them for the day.”
Ethan’s day included wearing a personalized flight suit, a swearing-in ceremony as an honorary 2nd Lieutenant, riding in a Marine Humvee, receiving a 1/100 scale C-130 Hercules plane with his name on it, sitting in the crew chief’s seat of a C-130 as it taxied down the runway, visiting with base police and fire departments, and having lunch with his family and base and hospital personnel.