thirty-seven

37... does that number have any significance to you?  Probably not, right?  In June of 2008, that number became my worst enemy.  37 years is the average life expectancy of someone with CF.  I remember reading that fact right after we received the phone call about Kaelyn being a CF carrier.  At that moment I knew nothing about Cystic Fibrosis, but there was one thing I was certain of.... knowing 37 years isn't long enough.

After Kaelyn's positive diagnosis of CF ten days later, I burst into tears because once again the number 37 was back to haunt me.  It just wasn't fair... and it STILL isn't, nor will it EVER be.  Think about it, how old are you right now?  I'll be 30 this summer and I'm certain that 37 years of life isn't long enough for me.  Sure I've had many amazing life experiences over the past 30 years, but what about all the experiences I would be denied of because my life was cut short?  Some of you reading this may be well past 37 years... imagine not experiencing all you have once you passed 37.  Some may be a year from 37, five years, ten years... imagine.

One thing I hear all too often is people complaining about getting older.  People ashamed of their age or growing another year older on their birthday.  What's so bad about turning 30, 40, 50, 80?  For many, and not just those with CF, growing older is a privilege they are denied.  Fighting to stay strong, healthy, and positive so they can live life to it's fullest and never complaining about growing another year older.

The worst part about the number 37 is that it's just an average for those with CF - I know some who live well past 37 years, but at the same time I still hear of too many who don't even come close.  And sure none of us know exactly how much time we'll be given to live our lives, there's no guarantees... that's why life should never be taken for granted... as well as growing old.  Enjoy that privilege,  always.

We need a CURE!
http://www.cff.org/Great_Strides/JulieWeber

love and support

This time of the year always has a special place in my heart... each spring is when the Great Strides walk rolls around, along with CF awareness month in May.  Even though this is only our 2nd year participating since Kaelyn's diagnosis at birth, it's really opened my eyes to a lot of wonderful things about the CF community.

If you follow along with Kaelyn's Kure on a regular basis, you probably notice the increase in posts around this time of the year...... and most of them are us reaching out again for your support - to walk with us, donate, and spread awareness.  Some may get tired of seeing the reminders, but this is the time of the year to put in my maximum effort so we can hopefully end CF one day.  This is Kaelyn's life that I'm working hard to make a difference in - not to mention the lives of all others with CF.  Every fact I write to spread awareness to those who may not know all we have learned, every time we speak at an event, every time we attend or host a fundraiser, and every year we walk as Kaelyn's Kure, I do it to make a difference....... no matter how big or small that difference may be.

To families like ours, what makes the biggest difference to us is the support we receive along the way.  Supporting Kaelyn's Kure extends in so many directions, some of which may have never crossed your mind.  I know for many, one of the first things that comes to mind when speaking in terms of support is making a donation.  In reality however, it might not always be possible.  So what else can you do to help?  When it comes to showing support there's plenty you can do, and most of these things are the most meaningful to families like ours......

• Walk with us.  It's a great way to be by our side on a day that's entirely dedicated to CF awareness.  Seeing all those faces who showed up to walk with us last year was simply amazing, especially the faces of some who I hadn't seen in quite some time.  Faces of those who I graduated high school/college with, faces of those who I've worked with, and the new faces of those who we just met after getting more involved with the CF community.  Walking is a great way to show your love and support!  
• Spread awareness.  This is one of the easiest ways to help, and to us, is the most heart-felt simply knowing how much people care.  Share our blog, our Facebook page, our CF documentary video, invite those who you know to the walk or to a fundraiser.  When we see family and friends sharing these things with others and spreading awareness with us, it really means a lot.  After all, "actions speak louder than words and to the families living with CF, it can some times be more helpful than dollars"!  :)    

Love and support mean the world to us...... And it's very touching to know just how much of that surrounds Kaelyn.

 
To walk with us, watch our CF documentary video, or make a small donation to our Great Strides team, please visit:   http://www.cff.org/Great_Strides/JulieWeber
The walk is just a little over a month away, so be sure to register online when you have a minute.  And if you walked last year, registration is simple because all your info will still be saved!

Sunday, May 20, 2012 - 10:00am at South Park, PA.  Hope to see you at the walk next month!!

"give a little love" - our first documentary

Last month Chad and I were asked if we'd be interested in sharing our story and filming a short documentary on CF to be used for awareness.  As Kaelyn's mom, I like to take advantage of each opportunity we have to raise awareness because it's so very important to us.

So many people in our lives are now aware of what CF is, but a lot of people don't see the other side of CF - which is what it takes to care for Kaelyn and keep her healthy.  It means a lot to us to be able to share our story with others......



If you'd like to support Kaelyn's Kure and the CF Foundation, please visit http://www.cff.org/Great_Strides/JulieWeber and click on "Click to Donate".  Remember, any amount you can donate helps to make a difference in someone's life.

Thank you to all the wonderful people in our lives who continue to support CF and our dream of finding a cure.  xoxoxo
Special thanks to Dan Burda for making this documentary - you're amazing!