Organized by: rebecca kinney
EVENT DATE Jul 10, 2014
My name is Rebecca. I have a 13 year old daughter named Lizzy. She a very special little girl and always has been. When she was born she had transposition of the main arteries. Her arteries in her heart were backwards. She had open heart surgery when she was 32 hours old. She went home 10 days later with no problems. That was the miracle. 11 years go by with no problems. Then, at 11 years old, in Oct of 2011 something happened. She was having very strange episodes. She was turning pale and was almost unresponsive. This would last for a few minutes and then it would go away. But the effects lasted for hours. It would completely wear her out. Because of her heart issue in the past I took her to a cardiologist. I don't know why I did but very thankful that I did. The old surgery was checked and it looks brand new still. While they were checking it they found something that no one ever expected. She was diagnosed with Pulmonary Arterial Hypertension. Its severely high blood pressure. Its incurable, rare, and aggressively progressive. There are only 7 Drs in the whole country that evens deals with this disease in children. High blood pressure is not rare. in children, extremely rare. There is no children studies or medications for this. The medications she is on are for adults and are some massive drugs that have to come from a specialty pharmacy. In the 2 1/2 years since she got diagnosed she has shocked her Drs. There are 3 catagories to this disease and she doesn't fit in any of them. She has had a lot of breathing problems and that doesn't usually happen. She is apart of 4 research groups because even the best Dr in the country doesn't know what or why. She has been on 5 ventalators in her life. Because of that her nose has been damaged. Her Dr wants to try a procedure that will help with that. It could help her breathing and give her a better quality of life. It could also reverse the effects of this disease. After all this time, the money has ran out. Im a single mom with 4 daughters and a massive disease. The time off work and travel is about to ruin me and us. There are so many medicals bills I cant keep up. We are asking for help with travel expenses so she can have this surgery. She has lost so much. She had 3 to 5 years of life when diagnosed. Im hoping with this procedure and her breathing better to get 10 to 20. She is home schooled, she is isolated quite a bit. But the worst thing that could happen to her is the flu of any kind. Her lungs wouldn't be able to handle it. We have been on our own for a long time. We do not have very much of a support system. This is why we need your help.