Stefanie's CCHS Medical Bills

Stefanie was born on July 3, 2007. She was quickly taken to the NICU because she had fluid in her lungs. After a week in the hospital she was released. She came home for the next 6 weeks. At about 7 weeks of age she started turning white as a ghost when she was sleep. She stopped eating and was gasping while asleep. We took her to a cardiologist who said her heart was fine. Our next stop was going to be a Monday morning appointment with a pulmonologist however I made the decision that she wasn't going to make it until Monday and took her to our local hospital. When I got there everyone jumped on her. Within a few hours she was intubated. The next day was when I learned of this horrible disorder called Congenital Central Hypoventilation Syndrome (CCHS). It is a genetic disorder affecting the autonomic nervous system, primarily respiration while asleep. Stefanie currently uses and will require for the rest of her life, a ventilator to keep her breathing while she sleeps. With the recent drops in health insurance we are finding it difficult to keep up with the constant, never ending medical bills. We adore Stefanie and he zest for life and would never change a thing about her. There are many parents in similar situations and it's unfair that keeping our daughter healthy and alive should come with such a huge price tag. All your donations will go directly to Stefanie's medical bill which in 2014 were roughly $10000. We thank you for your kindness and generosity.