Dear Capri’s Crusaders,
First of all I to apologize for not sending out a thank you to everyone who donated to the Cystic Fibrosis Foundation last year. The amount of support received through fundraising and prayers last year was truly miraculous!! As many of you know my goal in 2009 was to raise $200,000 for the Cystic Fibrosis Foundation to help fund vital life saving research. In a round about way due to prayers, financial support, and God the goal was met!!! Again please accept my apologies for not sending out a thank you. I want each of you to know that our family gets to experience first hand the effects of each dollar everyone of you has given and each prayer so many of you have prayed. If you remember in my letter last year I informed you of the hope we had in a new medication that was in trial stages that actual treats the defect in the cell that causes Cystic Fibrosis!! We also were extremely excited because there are over 1500 known strands of DNA that cause CF and this medication happened to be targeted for one of the two strands of DNA that Capri has (which only 3-4% of the CF population carry, it is the G551D mutation). Again I want to emphasize that without the support of the CF Foundation NONE of this research would be possible. Due to the fact that CF is a very rare disease it gets no federal funding. Even more devastating is the fact that very few people even know what Cystic Fibrosis is. These issues have sadly ended up costing the lives of thousands of individuals at a very young age. Low awareness and under funding have gone on for WAY to long. The word needs to get out that a CURE is within reach! Can you imagine the money that would come in if a cure for cancer was on the brink of the horizon? It would be major news all over the world and the money to fund it would never be an issue. How many of you have heard from anywhere how close the science is to a cure for CF? This is the reason I have dedicated my life to raise awareness, support, and money for the Cystic Fibrosis Foundation. Funding is needed just as much today as ever. Can you imagine the frustration that lives are lost daily due to the under funding of CF. This becomes a lot more than just frustration when it is your child or your most precious friends in the battle against CF. Being a genetic disease CF patients are fighting to stay healthy from the moment they are born. It is unreal the amount of medication, treatments, money, and strength it takes daily to slow down the effects of this horrific disease. To all those that have joined in the fight for CF patients the impact that you all have had is simply overwhelming. To look back and see how little to nothing was known just 60 years ago about CF it is undeniable that the Foundation has bought life for those diagnosed with this disease. Since the start of the CF Foundation life expectancy has raised 32 yrs!! If you were diagnosed with CF 50yrs ago the doctors would have told your parents that you would probably not live to be old enough to start school. Today the prognosis is much better, the current research says that 40% of CF patients will live into their late thirties. The huge increase in life expectancy can be credited directly to the CF Foundation. Every medication and treatment available to keep CF patients alive the Foundation has had a hand in funding. Nearly 90% of every dollar raised for the Cystic Fibrosis Foundation goes directly towards research for the treatment and cure of Cystic Fibrosis!! There is promise and hope for a cure for this genetic disease and it is directly because of the dollars you have given to the Foundation that it is possible. The Faulk family gets to experience first hand the hope of CF standing for CURE FOUND!! Let me tell you about our journey to TN in hopes of a cure for our little girl.
Last year after leaning about the success of the new medication in trial stages,VX-770, I reached out to all of you to join me in the fight for my child’s life. This medication was actually proving to be extremely successful and effects were seen that it was stopping the process of this horrific disease. The medication had gone through the 2nd clinical stage and included in the 3rd phase was trying it in children with the G551D mutation (Capri’s mutation). The 3rd phase trial was set to start in August of 2009 and after speaking to the local foundation coordinator I realized that Capri had just turned six and was now old enough to be involved in this medical trial. My husband and I discussed it and decided that we really wanted Capri to be a part of this trial. It was a 48week long study and I started checking daily for the FDA to approve the trial and list the sites where the trial would be held. Only 30 children would be accepted into the trial and of course they had to meet all the criteria to be approved. Things fell into place and when they finally listed the states the trial was to be held in my husband and I discussed our options. If we could pick, Knoxville TN, was our top pick of about the 25 states listed in the US. I called the company that makes the medication and asked them for a list of phone numbers to the hospitals that were to be involved in the trials. He only had a few numbers and Knoxville was not one of them. I called the ones he gave me and left messages. He called back a few hours later and said Knoxville just listed their contact information on the site. I called them and left a message and guess what, they were the 1st to call me back. I will never forget the moment I received the call. I was at work and I all most had to pinch myself to see if this was real. Here was an opportunity I have prayed for the last six years everyday of my life. If accepted into the medical study Capri would get to start on the medication that would possibly stop the damage of CF. Also here we had an opportunity to give back to the CF community by helping get this medication FDA approved. A CURE for CF, of course I wanted to believe that it would happen someday, but if I were to be honest it was a dream and a prayer that I had little faith would come true. I had a great conversation with the trial coordinator in Knoxville. I asked her if we moved there would Capri have the opportunity to be in the trial. She could not believe that we were willing to pick up and move 900 miles from home. She understood our excitement and she said she would ok it with the doctor and call me back. She called me back and asked if we could move to TN within the next month. The trial was set to start in August and if at all possible we needed to be moved by then. I was overcome with joy and fear at the same time. How would this all work? Let me tell you that the work of God is amazing and the power of each of your prayers sustained us through the scariest time of our life. I called a realtor that night who was a mother of a CF child that I had meet at a CF walk years before. I asked her if she could possibly sell our house for us. She came over the next night got the paperwork done and had the house listed by Friday of the same week. She was another angel in the journey of our story! l The house sold within hours of it being listed and the miraculous part was there were at least 15 houses for sale in my neighborhood that had sat unsold for months!!! Everything else fell into place like clockwork. I could truly write a novel about the details that God worked out for us. I quit my job, we packed up our three kids, and we left the only home us or our children had ever known. We left every bit of our family and friends for a town where we knew no one. We were on our way to a house I found on Craigslist in a tiny little town 40miles outside of Knoxville. It went so quick we did not even have time to go look at the house or town before we moved. We truly left everything that we knew in life in exchange for the HOPE to have a healthy child. I looked to God for the peace that this decision to uproot our family was the right decision, that it was his will and not mine that I followed. I can tell all of you that your prayers for our family are truly all I felt I had at times. God has taken us on a journey, faith has led us, hope has given us the strength, love has given us the hope, and prayer has given us the love!! I can’t thank you enough for the prayers and support from each of you, you truly have no idea the impact it has made on our lives. We will be living in TN at least until the summer of 2011 and God could not have given us a more beautiful home away from home. We have met some of the best friends we have ever had and really inherited a second family through their love and support!!
The trial was set to start last August and only the dosing portion has been done. We have learned the value of patience over the last 9mths. Along the way we have had some scares with Capri’s heart and she also contracted MRSA in her lungs. God has held us up and she is doing well at this point. I am home schooling her this year and will always cherish the extra time I have been blessed to spend with her. Cooper and Calli are doing great and have adjusted very well to the move. The older they get the more understanding they have that their sister has a fatal disease and that brings up a whole new set of issues to deal with. Calli and Capri have become best friends and the love and bond of sisters is truly amazing. With that extreme love brings me fear of what they will have to watch their sister endure if a cure is not found.
We are overjoyed that Capri is finally scheduled to start the trial April 19th!!! She did receive one dose of the medication for Part A which was the dosing portion of the trial . At that point she was the first child and the youngest person to ever receive VX-770. Capri is truly a part of something miraculous. I want to thank each of you for your funding of this Foundation. The day she 1st received the medication the nurse let me put it in her mouth. I can’t emphasize enough that it is because of donations to the Foundation from people like you that I got to place a promising medication in the mouth of my terminally ill child. This medication has the potential to turn CF into a manageable disease instead of a deadly one. If you soak up those words it is evident that the monetary support of this Foundation is truly LIFESAVING!! You can see what each of you have been and can continue to be a part of!! I don't even have words to describe how grateful I am to each person that has joined me in the fight for my child's life. YOUR NAME to me is the name of an angel that has helped me fight the biggest battle of my life!!
I ask for your continued prayers and support of the Cystic Fibrosis Foundation again this year. My goal is to raise $15,000 for the annual Great Strides Walk to cure CF. We would appreciate your donation of $20.00 or whatever amount you can afford to support this lifesaving cause. Since we are living in TN I have included a envelope addressed directly to the Foundation in Oklahoma for you to send your 100% tax deductible donation. Make your checks out to the Cystic Fibrosis Foundation or CFF in care of Capri’s Crusaders. For those of you that receive this by email if you want to mail a check instead of giving online mail it to the Cystic Fibrosis Foundation Sooner Chapter Bethany Bank Tower 3908 N. Peniel Avenue Suite 330 Bethany, OK 73008. You can also donate 100% secure online at http://www.cff.org/Great_Strides/NicoleFaulk6594 or on my blogpage at www.capriscrusaders.blogspot.com. Also we would love for you to join our team on face book, search Capri’s Crusaders and join us in our fight against CF. Please reach out to your friends and help us raise awareness about CF. Forward this letter to all your face book friends and ask them to take 5minutes to make a donation of any amount to help our cause. You never know how God is going to work through you. For example a very precious friend of mine reached out to her boss to support the Cystic Fibrosis Foundation last year and five minutes of her time will end up raising thousands and thousands of dollars over the years to come!! A $200,000 goal seemed like a far reach last year, but you all blew me away!! So many people stepped in and helped and that money raised will help each and every person fighting CF!! We lost our most precious friend Missy this year which was such a tough reminder that we are in a race with time. THANKS FOR JOINING ME IN THE FIGHT TO CONTROL AND CURE CYSTIC FIBROSIS!!! GOD BLESS
Nicole, Capri, Calli, Cooper, Dustin Faulk