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Welcome to Tracey King's Page

Tracey King

Tracey King

Hello friends, family, coworkers, strangers, and all that want to help me make a difference!  I am being honored by the Cystic Fibrosis Foundation at a special event recognizing outstanding professionals in my community. In accepting this distinction, I have committed to raise money to help the Foundation realize its mission of curing cystic fibrosis (CF) and providing all people with CF the opportunity to lead long, fulfilling lives.

First, let me tell you how my journey with this incredible cause started.  I have been friends with Nicole Wiza since Junior High.  Her family has become like my own, and has welcomed me into their lives and homes throughout the years. As I became pregnant with my second child, I soon found out that Nicole's sister Jenna and her husband Scott, was pregnant with their first.   
When Jenna was pregnant with Luke she found out that she and Scott were carriers of the defective gene that can cause CF.  This meant Luke had a 1 in four chance of being born with Cystic Fibrosis.  (In order to have CF both parents have to have the defective gene which is why it is more of a rare disease).
During the pregnancy, all the markers and signs looked "good" so we were not really expecting a positive diagnosis upon his arrival.  The results of Lucas' newborn testing showed he had CF and the sweat testing that followed confirmed the diagnosis.  Jenna received a call one day asking her what care center they would be using for their newborn with cystic fibrosis - to say we were in shock was an understatement.
However, the Foundation as a whole, and particularly the local chapter turned out to be an amazing resource and a very helpful community of people who were all struggling with the same situation.  
Lucas is "fortunate" in that his gene mutation is one of the more "common" ones in the CF population.  However, there are many in the CF community with the more rare mutations for which do not have as many helpful drugs/treatments.  Because this is genetic there is no cure.  The primary focus of the Foundation and the fundraising is to find a CURE (the tagline is to make CF stand for Cure Found).
There is some amazing research that has been done because of the fundraising.  For instance, the life expectancy of someone with CF 30 years ago, was age 30.  Today, many are living to age 50.  There has been some breakthrough research that targets the defective protein directly which is resulting in a lot of CF patients seeing a lessening in their symptoms as well.  Whereas lung transplants used to be expected for someone with CF, the need for these has decreased in the modern day population thanks to all the progression of the science and treatment modalities.
The purpose of the fundraising is to keep funding the amazing research that is ongoing trying to fix the heart of the matter - the faulty gene and to battle directly against the mutation.  However, that is very costly and very intricate.  Therefore, a lot of money also goes towards improving the treatments for CF which are, again, vast given that no two CF patients have the same symptoms.  
In Luke's case, his lung function and capacity has been pretty good to date.  However, because of the CF, his body doesn't have the tools to fight mucus build up that covers the lungs.  Therefore, when he's "health" twice a day he takes medications via nebulizer and does breathing treatments while wearing a chest wall oscillation vest that basically vibrates his lungs to break up the mucus while he inhales the medications.  Again, he does this twice a day when he's "healthy" just to try and maintain - when he's sick or having an increase in mucus buildup, this can increase.  He does have pancreatic deficiencies which affects how his body absorbs foods.  Therefore, he needs to take enzymes before he has any kind of food - so before any snack, treat, meal, etc. and he needs to focus on high fat foods as well.  
Most recently, Lucas has been fortunate to get on the drug Trikafta which is a combination of three drugs that targets the defective CFTR protein with the goal of helping the mutation function more effectively.  He takes this twice a day.  Trikafta has been considered a "breakthrough" drug and really only came about because the Foundation is so good at fundraising and using the means to keep up with the science/tech.
In his short 7 years, he has had to undergo one surgery - when he was 2 his sinuses became so clogged up with mucus that it impacted his breathing and talking.  The had to obtain a procedure to clear that all out.  This is something that is monitored at each of his quarterly CF visits along with diagnostic tests to check on his lungs, respiratory capacity tests to see how the lungs are functioning, etc.  

Luke has become best buds with my nephew Ash.  They have developed a friendship through school, sports, and different camps.  I want everything for Luke that my nephews and daughters can have.  

Please help me meet my fundraising goal by making a donation. By supporting my fundraising efforts, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.

Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is over 50. Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.

To learn more about CF and the CF Foundation, visit www.cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!

Luke rocking his vest and keeping entertained with the help of his Uncle Jeff!

Trying out the oscillation vest. Luke does this at least twice a day!


raised of $50,000 goal

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