Tuesday, April 30, 2013

Great Strides 2013

Each year my amazing sister in law and brother in law go for a little walk.

Well, it's more than just a little walk.  It's a great stride, because each year they are walking to support cystic fibrosis research.

As many of you who've been around for a bit already know, my awesome niece Livi has cystic fibrosis.  Livi was diagnosed shortly after birth, and is one tough cookie who has been through surgeries, treatments, and medications as part of her every day life.  Each year her family walks in support of her fight.

Here's a message from my sister in law about their progress this year:

I can't believe another year has passed - Livian will turn 5 this year. She loves school and all her friends and is looking forward to starting Kindergarten in the fall!! How time flies. She continues to be an active little girl, she played soccer and is currently preparing for her second ballet recital! She just had her first sleepover and longs to ride her bike without "stabilizers".

Livian is just like any other kid, she just has to fight a little harder. Livi loses 2% of her lung function per year, she has to eat 1500+ calories and stills struggles to keep a healthy weight. She currently takes 150 pills and spends 15 hours a week doing her breathing treatments, and that's when she's healthy. She does all this with little complaint because she knows it helps her grow and breathe. She has however, become an expert negotiator... "5 more minutes".

During the five years since CF has entered our lives I have been encouraged and inspired by the amazing people I have met who have been fighting this disease for 20 or even 30 years. Some of these people continue to fight despite multiple hospitalizations and procedures, some even undergoing double lung transplants as early as 20 years old. Unfortunately, I have also known too many equally amazing people who have lost their fight against CF way too early. As a mother, my heart breaks every time I hear of the challenges that lie ahead of my daughter and my family. You can help change her future.

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! But 40 years is not good enough. Thanks to the CF Foundation and all the generous donors who support our cause, the future has never been brighter. There is a new drug, Kalydeco, that actually stops the progression of the disease in 4% of people with CF. This 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 for ALL people struggling with this disease. We now know the disease can be stopped, and that fact fills me with hope. We are now 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 loved little girl, please help us give her the bright future she deserves.

If you feel so inclined to head over to their team site, please do so to make a donation.  However, if you're unable to donate, please take a peek at the CFF site and get educated on what cystic fibrosis is and how it affects those who have it!

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2 comments:

  1. The link right now is taking me to a page that just says about: blank.

    ReplyDelete
    Replies
    1. That's odd. The first link (same link) in the post worked and the second link didn't. Should be working now!

      Delete

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