ATDC - Association for Technology Dependent Children Angela's House
  Residential Services for Medically Fragile Children
Coordination of Complex Home Care Services

In the News >> Newsletter

Fall 2006 Edition
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Kiley's Story

I can’t quite remember what the weather was like the day I met Bob Policastro from the Association for Technology Dependent Children, “ATDC”. Everyday had been gloomy and gray until that point. My wife and I had a lot of questions ahead of us, but few answers.

You see, my wife and I had been living behind a curtain, next to my daughter Kiley’s crib in the pediatric intensive care unit “PICU” of Schneider’s Children’s Hospital for that last week and a half. The day after Christmas 2005 we found ourselves in the Emergency Room, Kiley was sick and was having trouble breathing. We were quickly moved up to the PICU where we sat and waited for answers. We knew Kiley had Spinal Muscular Atrophy, she had been diagnosed back in July at the age of 3 months. SMA affects the involuntary muscles of the body. It becomes more and more difficult to breathe and swallow as the children get older. The doctors told us to expect days like this. We tried to prepare ourselves for this, but you can’t really prepare yourself for living with your child in the PICU of a hospital.

When Bob came in and introduced himself I think I was half asleep, which is how I spent most of my time there. My wife and I took turns sleeping in a chair. The other, holding Kiley’s hand. Bob had such a calming sense about him. He told me about himself and how he could remember being in my very situation a few years earlier. After our conversation Bob assured me that he would help us with anything we needed. At the time I didn’t realize just how much Bob and ATDC would help us.

A few months after getting out of the hospital, my wife and I found ourselves in between insurance companies. I had started a new job that offered different health insurance. In the process of switching over insurances, the medical supply companies stopped sending us the supplies we needed for Kiley’s care. The paper work for the insurance companies was all over the place and no one wanted to give out supplies without payment. It was almost $3000 a month for Kiley’s supplies. My wife and I could not afford that. What were we going to do?

I called Bob and told him what was going on. He could hear the panic in my voice, and once again with his calming tone he said “I will take care of this, you have enough to care for at home”. I knew Bob would take care of it. A few days later the supplies arrived at our door. Bob had made a few phone calls, and was able to pay for Kiley’s needed medical supplies through ATDC.

And again a few weeks ago, Bob called to see how things were going. We explained how Kiley had gotten too tall for a regular stroller and was in need of a medical stroller. The insurance companies denied payment for this stroller. A few weeks later Kiley was back on the go. Bob and ATDC had again helped us. It allowed us to take Kiley outside again where she could truly experience life.

Having a child with the medical issues we face each day is difficult enough without arguing with insurance companies over what you need and what they “think” you need. Having a person like Bob, and the fine people over at ATDC, certainly makes it easier. I don’t know where we would be without their help. It’s nice to know that someone is willing to go to bat for us when we really need it. Thank You to Bob and his staff and all the generous people who support ATDC and Angela’s House.

 

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