Maddie's Oxygen Machine

Our very active, tender hearted daughter Madison (aka Maddie) was born with a very complex heart defect called Hypoplastic Left Heart Syndrome (or HLHS). She has had some complications due to the HLHS which has required her to be on oxygen for about 18 months. She had stayed rather stable until about 6 months ago when her oxygen stats started to drop, the original oxygen tank was small enough for her to carry in a backpack on her back. She has had to be increased to a larger tank that she now pulls behind her on a cart. Even being very large, she has to use so much that this tank only lasts about 2 hours. At that rate, we need 24 tanks delivered/exchanged to our house every week. This has become a time consuming, not to mention space consuming task. Everyday we have to transport tanks to school that have to be changed throughout the day. This has become an all day affair that is putting a ton of stress on Maddie. There is machine called a Portable Oxygen concentrator (POC) that can replace those 24 tanks. This machine runs on batteries and takes outside air and turns it into the clean oxygen that she needs. This machine costs a little over $5000 to purchase, and the insurance companies will not pay for any of it. They deem the POC as a luxury item since she can use the 24 tanks instead. Maddie has had 3 open heart surguries in her young 9 years as well as 7 cath procedures. We are currently waiting for a 3D heart model to be completed for the doctors to decide which procedure would be best for her. These options include a 4th open heart surgury or a heart transplant. We would appreciate any help that you can give us to get Maddie a POC to keep her in school as long as we can and to give her as much as a normal life as possible until her next surgury. If this next surgury will allow Maddie to be off the continued oxygen regimen that she is now on. Thank you for all your love and support!!