That someone is my beautiful daughter, Kambree.
She spends her days wishing she was still "normal", because for the first 7 years of her life, we were unaware that she had Cystic Fibrosis. We had concerns about her excessive sweating, and her constant cough that nothing seemed to remedy, but they were just mild concerns. Those years, she didn't have to spend hours every day hooked up to medical equipment. She didn't live her life in 4 hour increments, waiting to do her next round of meds. She didn't have to swallow pills every day. She could go to a sleepover, without figuring out how she was going to get her treatment. She could eat dinner, and wrestle with her daddy, until it was time for her bath and bedtime....without figuring out how to fit an hour and a half treatment in to the evening.
She misses those days.
I miss those days.
But those days are gone. Gone forever... UNLESS we get a cure.
As the time since her diagnosis ticks on, I am seeing more and more emotional wear on her. She will burst in to tears over little things.... like when I surprised her with mother/daughter CF shirts. When we had a "Purple Day" and friends and family all over the country wore purple for CF awareness.... tears streamed down her face as we showed her the pictures. I think the tears are just a good release of emotions she is bottling up... so even sometimes happy things, give her a nice excuse to let it out. She cries on a weekly basis now... missing her old life.... and all I can do is pray for a cure.... and cry with her.
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The emotional toll it's taken on her has been tough.... but the reality is, Cystic Fibrosis to her... right now.... is just an inconvenience to her carefree childhood. It's a thorn in her side. It's something that makes her different than her friends. For now, she has no clue what having Cystic Fibrosis truly means. She has no clue that this disease is life-shortening, and that every second she spends hooked up to the vest, shaking away.... is a second spent trying to prolong her life. Every puff she takes on her breathing machine, is in attempt to preserve her quality of life. It's all done in effort to fight a disease that is vicious, and does not like to grant people life on this Earth beyond their 30's. A disease that slowly clogs it's victim's airways and literally leaves them gasping just to breathe, until eventually, they can't. I don't mean to be graphic, or morbid...believe me...I wish I could "unknow" much of what I do.... but I can't. Someday, I fear sooner than later, Kambree is going to put the pieces together. She is going to ask the big questions, and we'll have to give her the full story.... it's a moment I dread. That knowledge is something I want to spare her from as long as possible. It's a cross I don't want her to bear.
But there's HOPE! I truly, truly believe that there is hope! Over the next 6 weeks, we are going to be putting our efforts into ADDING TOMORROWS for those with Cystic Fibrosis. We see so many different causes... and diseases needing cures....that I think we become hardened to the fact that it's possible. With Cystic Fibrosis.... I TRULY believe it's possible... I HAVE to hang on to that belief. Unlike many other diseases.. they've pinpointed the exact cause. Because of this, there are so many advances being made every single day, that are dramatically improving life (quality and expectancy) for those with CF---and ALL of this is possible because of funds raised! Check out some of these fast facts (from cff.org)!
1962--- Median survival age for someone with Cystic Fibrosis... was 10 years old
1989--- A team of Foundation-supported scientists discovers the defective CF gene and its protein
product (CFTR), opening the door to understanding the disease at its most basic level.
1993--- Pulmozyme is approved by the FDA... this is a drug that Kambree gets daily, that's job is to
thin the mucus, making it easier to get out
1997--- TOBI, the first aerosolized antibiotic, is released (this is one drug we've been trying to use
to eradicate her Pseudomonas)
2002---A Foundation-supported study shows azithromycin improves CF lung health. (another drug
she is regularly using)
2004---Foundation-supported studies in Australia and at the University of North Carolina show that
hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce
hospital stays, and becomes a therapeutic option. (she inhales this, twice daily)
Now, things start getting REALLY exciting....
2006---an oral drug in development by Vertex Pharmaceuticals Inc., with support from the
Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root
cause of CF, and works at the cellular level to open chloride channels that do not function
correctly in people with the disease.
2007--- Vertex selects a second potential drug, VX-809, for development. Like VX-770, VX-809
addresses the underlying cause of CF, but it works by helping the defective CF protein move
to its proper place in the cell.
2010---The FDA approves a new inhaled antibiotic, Cayston® (aztreonam for inhalation solution), to
treat CF lung infections. Developed by Gilead Sciences Inc., Cayston offers a much-needed
antibiotic alternative for CF patients who battle recurrent infections and develop resistance to
existing antibiotics. (this is the new drug Kambree is currently on 3x daily)
In the most recent of years, there is huge excitement and progress continuing to be made in the drug referenced above in 2006-7. It is already helping so many people, and currently they are working to approve it for more people.... it takes time.... and money....but I'm hopeful, that someday... this drug will be approved for Kambree. This drug is the first that is actually addressing the underlying cause of Cystic Fibrosis. It has brought so much hope, that maybe, just maybe, we will find a cure in this lifetime!
I look at all the research that has been done, and I'm so thankful. Thankful because I see the timeline, and the gains that have been made, and I know that this disease looks very different for my daughter, than it did for those diagnosed many decades ago. I'm thankful for every family, who was effected by this nasty disease, long before we were... for every dollar they raised, in efforts to find a cure... because as you can see in the specifics above, that money raised as dramatically changed things for those suffering with this disease. Without that... take us back to 1962... and where might things be for Kambree right now.
This disease only effects 30,000 people in the USA.... and at this time, gets no government funding...so that means every dime needed for research, is raised. Raised by friends and family of people that are effected by this horrible disease... and I know sometimes it's hard to believe that even little amounts, make a difference.... but they sure do! It's funds raised and put towards research that have taken the life expectancy from 10.... to 37. That's INCREDIBLE.... but not enough! I'm 36 right now.... and that's a haunting perspective.
Kambree turns 8 tomorrow.... and I'm afraid, birthdays will never look the same for us... they are now the true definition of bittersweet. Bitter....because we know with progressive diseases, time takes it's toll on a body.... and birthdays are certainly an indicator of passing time. Sweet, because the Lord has blessed her with yet another beautiful year on this Earth... and boy, it's been a great one!
In honor of her birthday.... Kambree set a goal to raise "a thousand hundred dollars" for Cystic Fibrosis....which I am going to paraphrase to mean.... $1100. It's quite a goal, but I know is possible, if some of you who have followed our story, would be willing to help. It's never fun asking for donations.....but if you could spare, even $5 or $10 towards the cause.... it would be appreciated more than I can even put in to words!
Donating is super simple...
1. you go to this link....White's Warriors
2. Click on Donate to a Team Member
3. Find Kambree White's name
4. Click on Donate
5. Give whatever you can.
And know... that one day.... when CF no longer stands for Cystic Fibrosis, but instead.... CURE FOUND.... you will have not only have made an 8 year old girls birthday wish come true..... but you will have added to her, and many others tomorrows!!!
We need a cure.... because someone I love.... is waiting! (and many, many others.)
