Cystic Fibrosis - Me & My Shadow

My name is Ashley and I am 21 years young and this is my story. 

I was born to a young couple in 1994. Right from the start I was a sick baby. I cried a lot and went through diapers like it was my job. I also was "failure to thrive" which means I wasn't gaining weight. I was so sick that by the time I was six months old an in home nurse was coming to the house to help my parents learn how to take care of me. One day one of the nurses gave me a kiss, when she did she said I tasted salty. She had my mother "taste" me. After that she asked if I had been tested for Cystic Fibrosis and suggested my parents find out. Low and behold I had CF. 

Cystic Fibrosis is a genetic life threatening disease. It mainly effects the respiratory and digestive systems. It causes the mucus in the body to become very thick. In the respiratory system the mucus coats the lungs. Making it harder to breathe and harder to do daily activities. In the digestive system the mucus is mainly in the pancreas. It blocks the enzymes inside the pancreas from getting out to digest food. 

I could only imagine how overwhelming that could have been for my parents to learn. Not only were they faced with raising a child young, but now a life threateningly ill child. 

When I was first diagnosed CF was still a fairly new disease. Which made it hard for my parents to take care of me. But with the help of the whole family they pulled together to give me as normal a life as someone with CF could have. 

I went to school, had friends, played sports, went on field trips and did my treatments. Looking at me you wouldn't be able to tell I am sick. Cystic Fibrosis is not something you can see in/on a person. But you can see it in all the medications and treatments we do/take. 

In my lifetime I have probably been in the hospital 15 times. Each ranging from a week to three week long stays. I've had around 100 IVs, two PICC lines, and one port-a-cath placed. I take seven pills a day, not including the enzymes I take every time I eat something. I do three types of nebulizers a day along with my Vest. I have to eat a high calorie, high fat diet. If I don't do these things everyday the mucus in my body will thicken, causing bacteria to grow which will lead to infection. I have seen what happens to people who don't do what they are supposed too. They loose their fight with CF and die. It's a little harsh I know, but it's a reality every CF'er lives with. 

The life expectancy of someone with CF is in the early 40's. I'm half way there... But that won't stop me from fighting the fight for life. With new medications an treatments beig developed every day, my strength to fight for life grows. 

There are 30,000 of us with  Cystic Fibrosis in the USA. And without daily medications and treatments someone with CF cannot survive. However these things coast anywhere from hundreds to thousands of dollars. Not all of us can afford them, and the US government gives us no funding. Which is why it is so important to spread awareness for this disease. To get the funding needed to help CF'ers afford medications and treatments. So that they can keep up the fight for life without worry. 

Please share this with everyone you can, help spread the word. 

Please take a moment to donate to the fallowing Cystic Fibrosis foundations as well: 

Www.cff.org

Www.christinadavidsonfoundation.org