Thursday, April 5, 2012

Cystic Fibrosis and my favorite niece, Livi

Tonight's post is going to be a bit more personal than kitchen cabinets and make up samples, but I have some information that is really important to share.  My niece, Livian, was diagnosed with Cystic Fibrosis shortly after she was born.  She currently undergoes treatment for this disease every day of her life, and has had to live a life somewhat different from other children because of it.  Each year, my sister in law Lauren and her husband Chris, along with family and friends, participate in the Cystic Fibrosis Great Strides Walk, and this year, they've asked us if we would join at our local walk.  

We will be walking for the Love for Livi walk on May 19th as part of the greater team for Livi.  Please feel free if you are in our area, to join us in our walk, or seek out a walk in your area to join.  I'd like to also add a personal note from Lauren about the walk and Livi's progress this year here:


This has been a great year! Livi is growing and thriving and we are very thankful for that. She has worked very hard to stay healthy - She is does her treatments, and takes all her meds with very little complaint. She has even learned a new "trick" - how to swallow a pill!! The hardest part of this year has been that she is getting old enough to realize that she is different. Though on the outside she looks just like other kids, she is starting to notice that she has to take pills with her food to help her digest when other kids don't, and that her little brother doesn't have to do a nebulizer or be shaken by a vest to help clear his lungs a few times a day. She doesn't let these differences keep her down but it breaks our hearts that it is part of her reality.

Cystic Fibrosis (CF) has come such a long way in just the past 20 years - the average life expectancy has doubled - it is now close to 40 years old! Thanks to the CF Foundation and all the generous donors who support our cause, it has been a special year bringing real hope to families like ours. The FDA approved Kalydeco - the first drug that actually treats the underlying problem in CF. All of the other current treatments are aimed at relieving symptoms and slowing the disease process. A small group of people with CF have been given more than an extension on a ticking clock - they have been given a cure! Unfortunately this first drug does not help 96% of the CF population including Livian, but there are drugs not too far behind this one that are just as promising to offer a cure for ALL people struggling with this disease. WE REALLY ARE CLOSE! For the first time ever we are not raising money find the science, we are raising money to buy the science that has already been proven to work! This is where you and anyone else can make a real difference.

Livian is a very special little girl and her family and friends love her very much. She enjoys school, playing with her brother and friends and singing and dancing. 40 years may be better than 20, but it is not good enough. Help us give her the opportunity to enjoy college and a career, marriage and children, and everything else she can dream up. And in the meantime as she realizes more about her disease, help us give her honesty and a future. When she puts it all together and asks the dreaded question "Will I die from Cystic Fibrosis?" help us be able to say NO and mean it. This is a rare case where money truly can buy happiness.

We are closer than ever before. The map has been created and the road has been traveled with Kaydeco. Give Livian and everyone else the vehicle to reach happiness.


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