Are you aware that every single day a baby is born with Cystic Fibrosis? 1 in every 3000 live births is diagnosed with CF. Are you aware also that every single day a person with CF dies? Is that ok with you?
Are you aware that CF is the most common, deadly, genetic killer of children and young adults, attributing to 484 deaths per year, 40 per month, 9 deaths per week, and one death each and every day?
Are you aware that a median predicted age for someone diagnosed with CF is mid 30’s? Is that a long enough life to you?
Are you aware that if you are in a room of 100 people, statistically there will be 5 symptomless, unknowing carriers for this devastating disease? That’s more than 12 million Americans.
CF is not a faceless disease.
We all know people who are living, fighting and surviving with this disease. We all know at least one precious child, Conner, who didn’t win against CF’s death sentence. CF is very real. It’s very lethal. It takes ahold of a body and ravages it, devestates it, complicates even the digesting of food and leaves a family overwhelmed with therapies, medical bills and doctor appointments. are you aware of the battle these 1000 new families diagnosed each year face? Have you seen CF’s progression…if not take a look of what it did to our sweet boy…
7 years ago we first learned of CF. And now 7 years later we know more than we could ever care to know about the power this disease has…
CF allows for some family memories, school and normal living…
sometimes it’s generous enough to let you lose a first tooth or two…
slowly is starts to change your life…adding lots of medications, dr visits and hospitilizations…
it forces you to have to Make your Last big wish…
then it forces your body to work so hard just to breathe and survive that you can’t wake up and enjoy life…
it forces you to knowingly celebrate your last birthday alive at 7….
spend your last mothers day together…knowing the only thing you want, you can never have!
do your last family trip together…
you try with all your might to not let it stop you from living and enjoying life…determined to smile thru the pain…
but sometimes it just shows the damage and pain…
and you quickly realize your no match for it.
One day you wake up and it’s the day you’ve dreaded your entire life…
the last one together this side of heaven…
you stand by and watch, helpless to save him or stop death from stealing your angel…
but…you can’t.
and you’re forced to try to pick up the pieces of your shattered heart and move forward without him…one quarter of your life…but you can’t
you’re a family of 5 minus a beautiful 1…and life will NEVER be the same…
BUT…CF is still real! It’s still stealing lives and loved ones everyday…
So we continue the fight in honor of him….the one who taught us how to appreciate the little things in life and face each day with a brave smile…
and to try our hardest to stop this disease before is destroys another family like it did to us…
Great strides for CF is May 14th here in Vancouver, WA. Please help us find a cure! click the link to join our team, donate funds, and pass along not only to help CF stand for CURE FOUND, but to let CF parents sleep easy at night knowing that their child isn’t a walking time limit…nor a statistic…but a child who has the potential to live a very LONG and healthy life without CF stealing away their dreams! I’m keenly aware of CF and what it does and is capable of doing and I’m not going to let it keep destroying. I know CF is not a faceless disease but has many, 30,000 faces infact. And now…you’re aware too…question is what are YOU willing to do about it?
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7136&idUser=134723
God Bless…
With broken hearts and LOVE LOVE LOVE
