AMARILLO, Texas (KAMR/KCIT) — In their young lives, John and Emma Detten have beaten plenty of odds.
“They have a genetic syndrome called Wolf-Hirschhorn,” said their mother, Stacy Detten. “John was born first, he was born in Dallas with a lot of heart defects. When Emma was born, Emma was stronger and much more stable, so we were in Amarillo more with some of the specialists here and she began having seizures, we were in the hospital a lot.”
John is 10, and at various times in his life, he’s had extended stays in the hospital.
During those times he fell in love with, “baseball. He can watch hours of baseball,” Mrs. Detten said excitedly. “He’s so happy watching baseball. We go to Sod Poodles games, he loves the Sod Poodles.”
Eight-year-old Emma is a little more introverted than her older brother, but is a little bit of an adrenaline seeker.
“If we could put her on a roller coaster, or a tilt-a-whirl, she would be in heaven, she likes to be physically active,” her mother told us.
In order to keep John and Emma rocking in their daily activities, they require special equipment and care.
“They both wear braces on their feet, they’re both playing T-ball this spring, they need wheelchairs to participate in that. They’re non-verbal, and some of the equipment we use to communicate with them is very expensive,” she explained.
The costs can be overwhelming.
“This fall, John had his third open heart surgery in Dallas,” Mrs. Detten told KAMR. “Emma took a medical flight to Ft. Worth three or four years ago, and the bill just for the plane was $75,000, and that’s not covered by insurance.”
In fact, many direct and indirect costs associated with John and Emma’s care aren’t covered by insurance.
“Insurance is great, but insurance doesn’t cover 100%, and insurance doesn’t cover travel, it doesn’t meals, it doesn’t cover some of the equipment that the kids need to participate in life,” she emphasized.
That’s where Children’s Miracle Network comes in.
“Most of what they’ve done for us, is I take them a bill and say ‘here’s this bill, we can pay this much of it, insurance has got this much of it,’ and they cover the rest,” Mrs. explained.
Whether it’s paying for unseen costs like meals during travel or helping with unexpected costs during a crisis episode, Detten says every little bit CMN contributes helps.
“It relieves such a burden, where I can focus on taking care of my kids, taking care of my family, and not worry about how we’re going to pay for it,” she said emphatically.
John will likely have to have more surgeries in the future, and he and Emma both will likely need new equipment as they grow and get older.
But no matter what lies ahead, the Detten’s know they can depend on Children’s Miracle Network to have their back.
“They just continued to support us through all of the different illnesses and surprises and different things that the kids have gone through,” Mrs. Detten said.