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This fundraiser ended on 08/06/12

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Please help support us so we can get our family moved so they are able to be close to their Dr.s

Our family struggles with a genetic illness called mitochondrial disease. There are four of us in the family -Amanda, Karl, Katy- 17 and Layton- 14. Layton was the first to be diagnosed in 2008 when the flu brought on traumatic illness that never seemed to return to normal. The pediatrician sent us from specialist to specialist not knowing what was wrong and why he wouldn’t recover. He had problems as a baby that the Dr.s would just blow off as a virus but this didn't turn out to be the case. After our 4th trip to a specialist we were led to a geneticist who partially diagnosed him with mitochondrial disease based on a clinical diagnosis meaning he fit the criteria and she was almost pretty positive, but we needed more info to fully diagnose. Over the next two years the Dr.s continued to run tests that started more and more to fit with the diagnosis of this disease. We first got back some research tests that pointed to the diagnosis of this so at this point we were pretty positive he had this. I (mom) have had physical problems all of my life that seemed to get worse with age. Now that I have had 14 surgeries at the present time with no true diagnosis it was time to do something so I volunteered to do the muscle biopsy to determine this so in hopes Layton would not have to go through it. It is very traumatic for someone with this disease to have surgery. In 2011 I did receive the heartbreaking news that indeed this is what we had and it was not going to get better ! The Dr.s didn't know how progressive it truly would be because it is different for each and everyone of us ,but they did make it very clear that we had a long journey ahead. Hospitalizations, testing etc. There is no cure for this disease or even close. It greatly impacts our quality of life and is very often an invisible disease that causes internal organs to fail. The mitochondria in the body is responsible for creating more than 90% of the cellular energy. When they do not work an energy crisis can occur often leading to death. There are only very few specialists in the US for this and being that Layton had no health coverage other than Medicaid that left us no option but to travel. The Dr. listed many places for us but none of them even close to Ga. where we reside. We ended up in Pittsburgh where we met a wonderful Dr. that after multiple tests started treating Layton for mitochondrial disease as she was almost 100 % positive as well. Little did I know that this would only be the beginning of this awful journey. We were suppose to return every 9 months and since Dec.of 2010 we have now just passed our 8th trip up there. All within a little over a year he has had to have a feeding tube put in, go to Ohio for testing for his stomach because it wasn’t functioning properly, had hospitalizations for breathing issues and extreme fatigue, had several stomach procedures for swallowing difficulty, had a muscle biopsy and spinal tap that needed to be done to further look into some things they found in mine, and a cecostomy button placed which helps his bowels move. After the spinal tap he had fluid leakage which caused some major issues as well. After the muscle biopsy in the beginning of 2011,it finally revealed that indeed Layton did have mitochondrial disease. One of the worst days of our lives even though we were expecting it. Layton was then suppose to return to Pa. every 6 mths. for checkups and whatever else was needed. We have had to do fundraisers to try and help us get through and if it wasn’t for a lot of people on here I honestly think there is no way we would have ever made it to see his Drs.It's been a very tough journey and it seems as though its just beginning...recently our daughter has been diagnosed as well as she is symptomatic at the time and have had a lot of health issues in the past. She did some other blood testing and things that pointed them out to this and I also carry a specific gene that would affect the mothers side as well. Katy recently blacked out behind the wheel of a car and wrecked. She is experiencing many current health issues as well. We recently took the kids to the Dr. in Pa. to find out that due to all of the problems the kids are having and a cyst in Layton's brain that we will have to make more frequent trips there. We cannot continue this travel! Karl was laid off from his job in April and has gotten no job leads in Ga. We have very limited time on unemployment as well. We are also being forced to leave our home by Dr.s due to extreme mold issues and drug usage that had gone on in this house before us that we weren't aware of until recent. It seems as though it is God's calling for us to move to Pennsylvania to be close to our Dr.s ..The assistance there is great as the children will receive free medical care and we will no longer have to worry about the stress of traveling back and forth. My children have been turned away from hospitals here for tests they have needed done due to Ga. Medicaid. Never have they been turned away up North. We are tired of fighting with the system here as it is so exhausting. Karl received great news on July 7,after a series of interviews that he indeed got a job in PA.!He will be staying with a friend. It is going to cost us over $2,500 to have our stuff moved alone without all the other expenses ..Our goal is to get in a stable home first before we take our things but it takes help to do this as his pay will be delayed for one month.We are starting this fundraiser in hopes that we can raise this as we are desperate at this point for help for these medical concerns! Please if you can contribute in any way this would greatly be appreciated! No amount is ever to small, not even $1.00 . Thank you so much to everyone who has helped us in the past as well. God Bless and thank you!If you would like to donate by paypal the address is keb1994@gmail.com
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