Air for Ash

Breathing...How can something that comes so easily to many and is done without a thought, then become such a struggle for someone with Cystic Fibrosis? The hereditary disease affects the lungs and digestive system causing the fluids in their bodies to become thick, which can cause complications for many. To learn more visit www.cff.org.
Ashleigh had many complications as an infant, causing her to spend the first 5 months of her life in the hospital. She is a true miracle and has shown us to live life fully and not take it for granted.
She has spent her life being admitted in and out of the Barbara Bush Hospital due to many lung infections caused by the extra thick mucus in her lungs and her failure to maintain her weight. The disease has caused her lung function to deteriorate and has brought her to where she is now, listed for a double lung transplant. This has created hardship for us as a family. There have been a lot of times where we have had to spent time traveling to doctors throughout her lifetime. Mostly, in Portland, but over the last year, many of those months we have had to make trips to Boston Children's Hospital where they have done the evaluation for transplant and have accepted her. We are now on call 24/7 and could receive the confirmation call that they have lungs for her......at anytime! That is when we will find ourselves located in Boston for the long surgery and recovery. We have been told the surgery could take up to 12 hours and it could be a recovery time anywhere between 4 to 8 weeks.
This has always just been part of our lives and we have dealt with it the best way we know how. We have always been fortunate enough to be able to rely on our families and close friends, to help get us through the many obstacles that we've been through over the years. We have accepted the fact that the time has come that we need to expand our support system. As much as we want to be able to do this ourselves.....that will be impossible! We need as much help as we can get! This is something we just cannot do alone! We have had many people ask what they can do to help out, and we figured it was time to start letting them. This page is a starting point to let people know that, yes, Ashleigh has been listed for a double lung transplant and yes, this will be the biggest and most challenging journey of our lives. We are most graciously hoping that there are enough generous people out there that want to ride along with us and help get us to our destination! Of course, that destination is Ashleigh being able to breathe freely with her new set of lungs and to live a happy and fulfilling life!