Wow, I didn't know 1 picture could have such a huge impact.
It is so weird to see my daughter holding this sign with the word TERMINAL on it and know its her talking about her mom. She is right, she is too young to know what I am fighting for. But she knows that I love her just as much as she loves me and I will do everything to make the terminal thing wait as long as I can...heck maybe even not see that part of it because a cure could be found!
I want to thank you all for taking the time to share this picture on your Facebook pages and help get the word out about CF. The thing is, the more people who know about the disease the more awareness and the more donations come in (and more support which is crazy how much we need when we are so sick!) Many of you know the CFF relies on all of the donations from people like you and I. Without you I wouldn't still be alive.
My family and I are working hard so that I can live long. That means getting the word out so please continue to do so! One "share"...your share...could be the share that reaches enough people to help fund new medication, therapies, and one day a cure. You can save lives, my life.
I was fortunate enough to be able to tell a little bit of my story at a CFF event in Milwaukee and I wanted to share a part of it with you:
"When I was born, my parents were told that the average life expectancy of a CF child was the age of 12, but that did not stop them from setting goals in my life and to make it as normal as possible. They wanted to see me crawl, then walk, then talk. I did. They wanted to see me toddle off to my first day of school; I did. They wanted to see me take my confirmation vows. I did. They wanted to see me attend High School and graduate; I did. They wanted me to enjoy sports and the camaraderie of classmates. I did. I played volleyball, basketball and softball until my lungs refused to let me. And of course, my parents wanted to see me outgrow my adolescent rebellion against this disease when I refused to take my treatments or pills.
They wanted to see me go forward with life and anticipate that I had a future at the age of 18 while life expectancy at the time had only climbed to 24 years of age. That was a huge challenge for me and a big problem for so many CF victims at that age. Why sacrifice and invest in a future that most likely will not be there, so many of my peers (gave up and failed to prepare for any future. But I had some special help, my parents, so I attended college and graduated with an Associates Degree. Then, what even my parents had not fully dared to dream came true -- I fell in love and was loved back by a remarkable man, Jeremy. And to top it off we were blessed with a miracle 3 years ago, a miracle we named Laila.
She’s healthy, she’s beautiful, she’s a handful, but she is a precious treasure and gives me purpose and goals in my life. I want Laila to have a mother to dress her for her first day of Kindergarten. I want Laila to have a mother who can heal a boo-boo with a single kiss. I want Laila to have a mother who can cheer at her basketball games and yell at the ref when she is fouled. I want Laila to have a mother she can cry to when some rotten boy breaks her heart. I want Laila’s mother to hug her on her wedding day and tell her she’s the most beautiful bride ever. I want her mother to be there to tell her that her newborn baby is adorable and looks just like her when she was little. I want Laila to have a mother and I’m sure she probably will. But what I really, really want is to be that mother! That means I need your help. I want a cure.
It’s close. The cure is close. The reason I have lived this long is because of people like you, people who care and are willing to share more than their sympathy. Let’s be honest. Neither I, nor any other CF victim wants your sympathy or pity. What we really want is money, because money translates into treatment and a cure. My health depends on my Lord Jesus Christ, and as He often does, my Lord uses the generosity and love of others to accomplish His miracles."
So again, thank you from the bottom of my heart (and Jeremy, Laila and my family thanks you too!) So lets keep this up and make CF stand for Cure Found!