C is for Cystic Fibrosis

C is also for Cameron. Cameron was born on June 13, 2012 at 10:02 am measuring 21.25 inches long and weighing in at 8 pounds 6 ounces. Joining his parents, Kevin and Laura, and his big sister, Valerie, life was perfect.

Cameron June 13, 2012

Cameron June 13, 2012

June 20, 2012 the telephone call came that Cameron’s newborn screen came back abnormal. No more information was given over the telephone. Laura tossed and turned while the lists of newborn genetic disorders flew through her brain. Laura had worked as a lab technician that ran the tests for genetic disorders in newborns. She went through the medical histories of both sides of the family – no genetic problems to be found. There must be a mistake.

On June 21, 2012 The entire family went to see the doctor. Laura and Kevin watched Valerie play with the curtain as if it were a shower, attempting to hold off the pain of whatever was to come. Dr. Wheeler, with tears in her eyes, informed them that all of the confirmatory testing was done, there was no mistake: Cameron had Cystic Fibrosis (CF). She and the CF nurses went over great patience and compassion the details about CF, but the fact remained CF is incurable and fatal.

June 21st began a journey that Laura, Kevin, Valerie, and especially Cameron never expected to experience. Laura shared this note on June 21, 2013, “This disease not only changed our lives as we know it forever, but it changed our family and friends lives as well. Thank you everyone for your support. We have fought this disease for a year now and we will continue to fight it until there is a cure found. Cameron may have CF, but we are going to continue to fight to make sure that CF will never have him.”

There is a fundraising walk that Cameron’s family has been participating in. If you are interested in supporting his family’s goal of raising money to research for a cure, please do so: Cameron’s Cruisers: CF Fundraising Walk

The Peterson Family

The Peterson Family

Cystic Fibrosis is an inherited condition that causes normally thin, slippery mucus to become thick and clog tubes, ducts, and passageways throughout the body, specifically in the lungs and pancreas. In order to get CF, both parents must carry the recessive gene. There are tests that can be done when a child is born or in people that are considering having children prior to or during pregnancy, although genetic counseling is recommended prior to having the tests done as an adult. With daily care, individuals with CF can live relatively normal lives, but it takes all of us to keep them healthy. Advances in medicine, allow many of those that have CF to live into their 20s and 30s, some even into their 40s and 50s.

Due to the damage that is done to the lungs, it is imperative that people with CF are not exposed to smoke. Second hand smoke, although not healthy for anyone, is very dangerous to individuals with CF. Please pay attention to the needs of those around you when/if you smoke.

Cameron 2013

Cameron 2013

Also, please pay attention to your pets, there are certain infections that animals will often have that need to be treated quickly and effectively if they are around people with CF or have compromised immune systems. The one that I see regularly in practice is Pseudomonas aeruginosa. This is commonly found in recurrent ear infections. If someone with CF inhales any of the bacteria (which is possible with really nasty, infected dog and cat ears), it adheres too well to the mucous in the lungs and results in extensive medical care and can be fatal. Please be careful!

Cameron's favorite hang out, 2014

Cameron’s favorite hang out, 2014

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19 thoughts on “C is for Cystic Fibrosis

  1. Thank you for highlighting CF and giving such wonderful tips on how to make life a little easier for a person with CF. I went to school with a young man with CF and got to know him (we both got to sit out gym classes so we had plenty of time to chat). It is a difficult road for a kid with CF. I am so glad to see people living longer, fuller lives with the disease.

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  2. It’s amazing how far medicine has come. A friend of mine and I were talking about CF just yesterday. As a teen, one of my favorite books was Alex: The Story of a Child, written by her father Frank? Deford. In Alex’s day, CF children didn’t live more than 2-3 years. She made it to 8 or 9 before succumbing. It’s a heart breaking story, but as I said, so wonderful to know that the life expectancy has improved so much.

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  3. This post is so well written. I really enjoyed reading it. I hope we manage to find a cure for CF and other chronic diseases so people like Cameron can live long and healthy lives.

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  4. He’s so cute; sad that he has CF, though thankfully medicine truly has come a long way so there’s more hope for him (like someone already said)

    betty

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  5. Thanks for spreading the word about Cystic Fibrosis. It is more common than most think. And even more people unknowingly carry the gene. I highly suggest getting tested for it if you are of Northern European decent before having children. My parents had never even heard of it and there was no instances in my family before I was born… I am the only one we know of that ever got CF. I wouldn’t have made it past 18 if I hadn’t gotten a double lung transplant back in 2008. I’m so happy that God has allowed science to come so far and that there is even the option of transplantation out there. So if you could spread the word about organ donation that would be nice of you. 🙂

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    • Thank you for sharing your story. I have actually written about organ donation already and will be in a couple more day. I pray that you will continue to grow stronger and share your story. There are only a few ways that we can each save a life and organ donation is one of them!

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