Benefit for Abbey with Cystic Fibrosis

Were having a benefit trying to raise money for my 3 year old daughter her name is Abbey. She has a life threatening disease, a lung disease called Cystic Fibrosis. This causes the lung to fill up with water and mucus basically drowning from the inside out, it also cause constipation to the point where you cant go for days and either it all comes out at once or you have to be admitted into the ER for a Gastrographic Enema. Its not the best experience for a child to go through especially not being put under just being held down and restrained. It came to the point where taking her to the hospital for this was getting stressful especially seeing my daughter in pain and having to be restrained is not something a parent wants to see. So the doctors told us about this surgery called a Cecostomy, what a Cecostomy is, it does a same thing as an Enema except from the top down so she doesn't get all the air and the gas along with the bloating. It is a better solution than having to keep making trips to the ER weekly. Basically its a balloon in her stomach connected the the "button" we do a daily flush with saline water to get everything moving around so she is able to use the bathroom with no problem. So we thought this was a good idea. Coming along with all the pain and some more ER trips but to Boston not just a 5 minute drive like usual. Come to find out she had an infection there was puss it turned black. They had no idea and after a few more trips they realized that they had put the wrong size tube in her. Without putting her under they just pulled it out to put a new one in. Seeing that as a mother was not a good feeling either. After all this more trips were made to Boston phone calls after phone calls just to get the same answer that they had no idea what was going on, we began to notice there was something coming out of the button we had some people say it may be her intestine or something inside her coming out. By this point we are furious i have my 3 year old crying she is in pain and the doctors are doing nothing. Finally we found out it was scar tissues called "granulation tissue" they had to have 4 people to hold my daughter to have that skin cauterized. Now we are still making trips to Boston, doing her nightly flush and whenever we notice the granulation tissue coming back we have to cauterize it ourselves to save us some trips. Ive missed many days of work to support my daughter to try and help her get better along with a family of 4 kids. The reasoning behind this benefit for my daughter is because the insurance is not covering all her medical bills, the expense of driving to Boston is pricey. It all adds up when we have to put food on the table for the rest of my family. Were trying to get all her medical bills covered because this is not going to stop any time soon. Its a life long fight for my daughter she has many supporters behind her we have many people who will help us on a drop of a dime to watch our kids when we have the unexpected visit to the ER once again. Anything would be greatly appreciated we love our Abbey and are trying to help her the best that we can, so if anyone else could help as well it would be a blessing.