WHY PERSNICKETY BABY BELIEVES  IN CYSTIC FIBROSIS... 

Two years ago my good friend Leslie Petrone-Hopkins almost lost her life to Cystic Fibrosis (CF). Les was born with CF, which is a life-threatening, genetic lung disease for which there is no cure and has a life expectancy of 37 years old.  The genetic defect causes mucus build up in the lungs and digestive system, creating chronic infections, and irreversible lung and intestinal damage.

Les has taught me a lot. It's nothing I haven't heard before: "Don't sweat the small stuff. Love the ones you love everyday as if it were your last," things of that nature. But when someone close to you teeters on the edge, you tend to listen, and listen hard, to just about everything they have to say. You want to soak up every minute you have with them and HOPE it will last forever.

When I got the call that Les had gone into respiratory arrest and had been put on a breathing machine, I made a pact with my family and friends to create our own t-shirts with sharpie pens that said, "BELIEVE" and to wear them until Les could breathe on her own again. 

As Leslie was struggling to gain her strength back, I realized it was my turn to give back to her for all that she has done for me. So I decided to take the BELIEVE shirt one step further by designing a special "Believe" t-shirt in honor of my friend. I decided that all proceeds for the shirts would go to the Great Strides Cystic Fibrosis Walk, which Leslie participates in every year. Although Les was unable to walk the event because she was too weak, it filled my heart to see her and her Team, C.aring F.riends, wearing the shirts at the Walk that year.

Some of you have met Leslie and therefore, I probably don't need to say another word. For those of you who haven't met her, she is a dynamic, energetic, caring person so full of life that you would never consider the possibility that every minute she struggles to simply breath, something we all take for granted. It only takes one chance meeting with Les to know that you have been touched by someone special, energized in your own life, and compelled to do what you can to help find a cure for this debilitating disease.

I can't change the fact that Les will have her struggles in the years ahead. But I can feel at peace with knowing that I support her cause, that

I am there for her as a friend, and that I always let her know just how much I love her.

If you are compelled to make a DONATION for CF, it's QUICK & EASY.  Just CLICK ON THE LINK below. This is a secure site, and donations over $25 are tax deductible. http://www.cff.org/Great_Strides/KimClark3990

We BELIEVE in Les, We BELIEVE anything is possible, We BELIEVE in a cure. We hope you BELIEVE too!  

With a Grateful Heart,

Kimme

www.PersnicketyBaby.com

If you like, read my friend Leslie's heart felt letter below:

Dear Friends,

The Poem below was written for me by one of my dear friends and devoted Team Members.  Her words gives you a glimpse of the daily challenges that I face with CF. She says it all…Having People like YOU BELIEVE in people like me gives me HOPE for a BRIGHTER TOMORROW!

I may have Cystic Fibrosis (CF), but Cystic Fibrosis doesn't

have me. I am so blessed for the wonderful life that I am

living — the Love and support of my amazing friends & family is

overwhelming. I finally feel optimistic about my future again.

I am feeling healthy, and there is so much to be grateful for right now.

THERE IS FINALLY EXCITING NEWS FOR CF! We had the biggest

drug breakthrough, with the development of two new

promising drugs (VX-770 & VX-809). Both are in the 3rd and

final phase of clinical trials, which means they are very

close to being approved by the FDA. Up until now, drugs

have only treated the symptoms helping to prolong life,

not eliminate the actual disease. These new drugs could

potentially cure CF and curing CF is what it’s all about!

In difficult times like this, medical research is the first to

take a big hit. We are getting so close, it’s important that

we don’t lose our momentum. This is why your support is

still so vital.

This year our Team, C.aring F.riends wants to raise $100,000. It’s a daunting figure, but...

I BELIEVE ANYTHING IS POSSIBLE

Love to you all,

Les

~~~~~~~~~~~~~~~

POEM:

Our dear friend Leslie

has Cystic Fibrosis

it’s a terrible disease

that causes her lungs to fill up with mucus

and it's hard to breathe

very hard to breathe

sometimes it feels like drowning

time passes

she's a fighter

but it's more and more difficult for her

to take a breath

sometimes

time

passes

slowly

sometimes she is fearful

but mostly she is hopeful

and so are we

because there are people like you

that BELIEVE in people like her

and want to help

optimism and diligence and generosity

are the medicine of tomorrow . . .

BELIEVE  in  b r i g h t e r  t o m o r r o w s   CURE CYSTIC FIBROSIS

By Kristen Pope (devoted Team member)

This is princess; I just got back from visiting her at Children’s Hospital.

(She was doing her breathing treatment)  Amazing Little Princess