Monday, March 30, 2009

GO TEAM!!!!!!!!!!!!

LET'S GO TEAM CAPRI'S CRUSADERS!!!!!!!!!!!!! WE ALREADY HAVE OVER $6000.00 IN COMMITMENTS AND $435.00 RAISED, AND YES IT IS ONLY WEEK ONE. KEEP UP THE GOOD WORK, WITH GOD ALL THINGS ARE POSSIBLE!!!!!!!!!

Friday, March 13, 2009

WILL YOU TAKE MY CF AND GIVE ME THE GOLDEN TICKET OF LIFE?


Greetings one and all,
I have prayed and prayed about what to say in my letter this year. It has been tough to find the words and I even asked Capri if she would write the letter. HA HA! For all of you who are new to our family we have been blessed with three kids. Cooper is eight, Calli is four, and Capri is six and she has Cystic Fibrosis. CF, as we call it, is a genetic disease for which there is no cure. Cystic Fibrosis is a terminal illness that affects the lungs, pancreas, and liver. 40% of people with this disease only live to the young age of 37.4 or older and the other 60% loose their precious life way before that. When all of these facts apply to the life of your own child they become a lot more than statistics, they become motivation. I write this annual letter to raise money to help fund a cure for CF. I also ask for your prayers that I will never loose my daughter, Capri Faulk, to Cystic Fibrosis.


We are truly in an era where a cure is on the horizon for Cystic Fibrosis. The Cystic Fibrosis Foundation in collaboration with VERTEX, a bio tech corporation, has found a chemical compound that addresses the basic defect for Capri's CF mutation. THIS YEAR IT WILL ENTER THE FINAL PHASES OF TESTING. Did you hear that and truly take it to your heart. They have a medication in trial stages that actually corrects the defect in the cell that causes CF. This medication is considered "A CURE" for this horrific disease. I am crying just writing those words, the emotion and hope that comes over me is overwhelming. The bigger miracle with this promising medication is this: there are over 1500 strands of DNA that cause CF. The strand that this trial medication, VX-770, treats is G551D. For many this is like a foreign language so let me explain with numbers. There are 30,000 Americans with CF and of those 30,000 people only 900 of them have the strand G551D. The medication in trial is only for that particular strand. (900 people) Well Capri Grace Faulk is one of those 900 individuals. Again tears and extreme emotion come over me!!!!!!!!!! This is not only a miraculous year for Capri but a crucial one. Of course in today's economic times with that great hope comes extreme caution. There is no way to get the medication FDA approved without money to fund the trials. We have come so close and we cannot stop now. Time is critical and is the difference between life and death. I will never stop the search for a cure until each and every person in our CF family is cured and I believe it is my time to step up and raise at least $200,000 to help fund life for my daughter. The quote that I received put it best "Sometime in the next 12-24 months it is very possible that we could receive the news that CF is no longer a fatal disease for Capri. With two pills in the morning and two pills at night, her treatment would be drastically simplified and best of all-- she could live a long and healthy life." That is the exact point I am trying to get across to all of you, but when I read that myself it motivates and moves me like nothing else I have ever felt in my life. Just for a second put yourself in the same situation, and add your child's name to the part that says "SOON WE MAY RECEIVE THE NEWS THAT CF IS NO LONGER A FATAL DISEASE FOR (YOUR CHILD'S NAME GOES HERE)" For a moment please just feel the emotions that come with that statement. I just want you to understand why I ask for you to give any amount of money you can, and get involved by sending this on to everyone you know. This is a quote from the company that holds Capri's Cure in their hands "The Cystic Fibrosis drug, VX-770, is being primed for the final stage of clinical trials this year. It represents an opportunity to develop the first oral pill that can affect the underlying protein abnormality that causes the deadly lung disease." THE SCIENCE IS THERE FOR A CURE, THE MONEY IS NOT. SO PLEASE HELP!!!!!!!
Each year around the time of the walk a friend with CF that we have come to know and love seems to be loosing or has lost their battle with this disease. I am never prepared for this and every time a little piece of me goes with them. But truly Capri has been so healthy sometimes I forget how critical and powerful Cystic Fibrosis can be. Unfortunately this year I have witnessed how quickly the disease takes over and sucks life out of the body. You would think the older Capri gets the easier and more accustomed to Cystic Fibrosis would we get, but it is the total opposite. CF is a progressive disease. The older you get the worse you get and this year has been evidence to that. Most people that come across Capri's path have no idea the severity of what this little girl endures on a daily basis. As a mom, witnessing the suffering of my child will never become easier. Capri had a bout with Pseudomonas around Christmas time. To hear the word Pseudomonas for someone with CF is devastating. This germ is attributed to death in 80% of CF patients that get it. It is treated with extremely strong antibiotics and the patient can live for a long time with it but it causes critical damage and over time destroys the lungs. During Capri's bout with Pseudomonas she had the worse cough I have ever seen and was coughing up blood. Her energy was totally gone and she was struggling to breath. WELCOME to CYSTIC FIBROSIS, this is the life she has in store if a cure is not found. Thankfully after a month of treatment she was able to fight the germ off this time.


The picture on my letter this year is different than in the past. My decision was instead of a cute picture of Capri that shows how normal and healthy she looks I would show her reality. This picture paints a portrait of the daily regimen needed to fight this disease. Her normal day includes an hour of vest treatment, an hour of breathing treatment, between 30-40 pills a day, and ten to fifteen medications. On top of all this she deals with the worse tummy aches due to the effect CF has on her digestion. But the most amazing part is that Capri doesn't let any of this stop her from living. Her energy outlasts mine and her siblings everyday of the week. The doctors started her on a new treatment that is a saline therapy. The CF doctors noticed that those people with CF that lived by the ocean had much better lung function, so with money that many of you donated they did trials on inhaling salt water. This therapy proved very beneficial so they now use it for everyday treatment of CF. To put it honestly the saline treatment is hell to watch your child go through, Capri coughs like crazy, gags, and is in extreme pain (the salt water burns both her throat and lungs.) She endures this daily with the best attitude, truthfully most adults could not withstand all she does just to stay alive. Her strength and dedication are gifts from GOD. This girls body may be sick, but her spirit has more life in it than anyone else I know. She is SO SO SO strong and even better yet strong willed. The first day she did this new saline treatment she asked me a question that I will never forget. Her question will motivate me until the day I die to reach out to others for donations to help fund a cure for my little girl and the 30,000 like her. She took the treatment out of her mouth and put it in mine as she was crying and hurting so bad and she asked MOMMY, WILL YOU TAKE MY CF????????????? I looked my child in the eyes and with more hurt than I had ever felt in my life (Even more than the day I found out she had CF, at that time I was hurting, this time my daughter was the one hurting) I had to tell my angel that there was nothing in my life that I wanted more than to take her CF but that I COULD NOT............... With the economy so bad it was so hard to write this letter and ask for money, but it finally hit me one day THIS IS THE ONLY WAY I CAN TELL MY DAUGHTER, YES, I WILL TAKE YOUR CF.
Please help me fund a cure for CF by donating to the Cystic Fibrosis Foundation. Our team walks in the Great Strides Walk each year to raise money for vital research and a CURE. Please make a donation of $15.00 or whatever your budget and your heart allows. I HAVE A TEAM GOAL THIS YEAR OF $200,000 and this is truly a crucial time for the CF Foundation as we are so close to making CF a manageable disease instead of a deadly one. As always your donation is 100% tax deductible. Please view our team website at www.capriscrusaders.blogspot.com, you may click on the donate now part of my blog, or the donate now part of my CF home page, or send a check made out to the Cystic Fibrosis Foundation to Sooner Chapter in care of Capri's Crusaders at: Bethany Bank Tower 3908 N. Peniel Avenue Suite 330 Bethany, OK 73008. This year I am asking you to please forward this email on to all of your friends, family, coworkers, and anyone you know. It literally only takes seconds for them to click on a button to donate any amount they can afford. No amount is to little, every penny counts. The CF Foundation has a lot of ways for corporate sponsors to get involved and we have all kinds of tools to help you if you want to get together your own CF fundraiser at work. Also we would love for anyone who can to come and walk with us on May 9Th at the Botanical Gardens in OKC, OK. You can go to the CF website at www.cff.org or contact Celia Palmer at the CF Foundation with any questions you have, 405-787-0056. I truly need each and everyone of you to help me save my daughter and we will be fundraising until DEC. 31st to reach our goal. Please keep Capri in your prayers for I believe miracles are performed daily through prayer. God Bless You,
P.S.- PLEASE FORWARD THIS TO EVERYONE IN YOUR ADDRESS BOOK, THE ONLY WAY CAPRI'S CRUSADER'S CAN REACH THEIR GOAL IS WITH YOUR HELP. If you are receiving this letter by mail please send an email to everyone you know that contains our web page www.capriscrusaders.blogspot.com and ask them to get involved. Thanks

Nicole Faulk and Family

Thursday, March 5, 2009

WHY?

I just had to post this. Our nightly routine consists of Capri picking something she wants to watch or books to read and her and I sit and do her treatments. For the past six years we have done this and Capri has always just accepted it with very few questions. For the past few months she has had to do the saline breathing treatments as well as her vest treatment. This is the treatment that is so painful to watch her go through but as always she has been a trooper. Last night she had picked out Cat and the Hat to watch and we had gotten her vest started and I was preparing her breathing treatment. She looked at me and started crying and she said mommy I do not want to do that one, she said I use to only do breathing treatments when I had pseudomonas or was sick. I said Capri you have to do this everyday just like your vest. She looked at me with the most devastated look and asked mommy do I have do that when I am 9 years old and I said yes Capri, and she asked do I still have to do that when I am 12 years old, and by now I started thinking and getting overwhelmed too at the thought that yes she would still be doing this gut wrenching treatment in six years, then I answered her with a little more hesitancy and I said yes Capri also when you are twelve, then she said MOMMY WHEN I AM TWENTY I STILL HAVE TO DO THAT, and I carefully said yes as not to break her spirit and overwhelm her, and she said mommy when I am 20 and all my friends are playing I am going to have to go and do this treatment? Here I sat explaining to my six year old that she can only take one day at a time. I said Capri just think of getting through doing it today and together we can get through it today and not worry about getting what tomorrow will bring, I promise you that I will be right by your side everyday doing it with you, you will never go through it alone. I told her this treatment will keep your lungs healthy, she said mommy just get me new lungs. Wow my little girl is growing up and realizing herself what a terminal illness is. I of course am not prepared to have to explain the word terminal to her but she is figuring it out on her own. I didn't quite know how to handle this. I told her that we needed to keep the lungs she already had as healthy as we can for as long as we can. Of course then comes the WHY and I said Capri you will more than likely someday get new lungs, but there is a chance that your body will not accept them. I HAD TO TELL MY LITTLE GIRL THAT HER DISEASE CAN TAKE HER LIFE and that is why we have to do these treatments. I felt like I needed to share this because I have been able to tell others her fate for years and there has not been one year that I have ever read Capri the letter I write to you all to raise money for a cure. I never wanted her to hear the words YOU MIGHT DIE, because I think that steals away the innocence of childhood and I don't want her to fear her disease I want her to fight it. I guess I am trying to share the burden of what happened last night because it is to much to deal with on my own. Capri is so very smart and I don't want her to ever feel different or scared but I want her to know that she must take care of herself to live. That the reason she goes through all this is so that she will be alive at the age of 20. My mom had a good point when I shared this story with her, she said Nicki when they find a cure for this disease then Capri won't have to do that treatment forever. That gave me a lot of hope to look at it that way. God tells us that we have to daily die to ourselves to live, I have gotten a taste of just what that consists of but it is hard for me to accept that my child, as a six year old, has to learn that lesson in another way. That she must daily go through the pain of her treatments to just have a glimmer of a chance to live. Please step in and help me promise my little girl that she does not have to do this painful treatment forever, if we can fund the research for VX-770 her treatment for this disease will only consist of two pills in the morning and two at night. PLEASE DONATE NOW!!!!!!!!!!!

Sunday, March 1, 2009

"THE GOLDEN TICKET" PRESIDENT OF THE CF FOUNDATION READS MY EMAIL

The You Tube Video that is on the bottom of this blog page is the copy of the message the president of the CF Foundation, Bob Beall, sent out as his holiday greeting this year. A few months ago I got an email about the current trial for the medication VX-770, which is the medication that has the potential to save Capri's life. The email I received talked about the success of the medication. As I was reading the email I felt so much emotion and hope and I printed it out to share with my family. Then I sent a quick email to the local CF Foundation Office. My email was to share with them the hope and joy I was feeling and thank them for their hard work to help get us where we are in research. My email touched them so they forwarded it to a CF medication rep, the rep was touched so he forwarded it to his boss, and he was touched so my email kept getting forwarded until it ended up in the hands of the President of the Cystic Fibrosis Foundation. When he received my email he happened to be at the National CF Conference. This is a worldwide conference for all the Cystic Fibrosis doctors, researchers, and scientist. When he read my email the words moved him deeply and he decided to read it to everyone in attendance. He felt it would motivate them to continue in the desperate search for a cure. I was deeply grateful that the short email that I sent my local CF office ended up motivating the people that had my daughters life in their hands. Then right before Christmas during a time that Capri happened to be very sick, I got a call from the Foundation. They asked me if it would be alright if President Bob Beall read my email on You Tube for his holiday greeting. Wow, what an honor. I was blown away to see the effect my words had on this amazing man.
I truly count on you all to step in and help me save the life of my daughter. I wish I had the words to motivate every person reading this to donate any amount they could, for words don't make any difference if no action is taken to change the fate of my child. Please join us in our efforts to give THE GOLDEN TICKET of LIFE to the thousands of people with CF.
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VIEW THE PRESIDENT OF THE CF FOUNDATION READING THE EMAIL I WROTE