My Great Strides Story
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. We walk for them and our son Nolan.
You can be part of our NOLAN PATROL! No matter the amount, every single dollar counts… every single share, every voice, it all counts. No matter what you can do to help lead us down the path to a cure is appreciated.
NOLAN PATROL IS ON A ROLL!!!!
Our sweet Nolan born March 8th 2022, had a safe, healthy delivery. We took our sweet boy home only to receive a phone call that he had an abnormal newborn heel prick test. It was confirmed via a sweat test that our precious boy had Cystic Fibrosis (CF) - a progressive genetic disease that affects the lungs, pancreas and other organs.
Immediately following the diagnosis, we were told by our Doctor over the phone DO NOT GOOGLE Cystic Fibrosis - and the reason being is on Google the outlook is grim - but PLEASE check out CFF.org.
After this phone call that changed our lives, we found ourselves on the Cystic Fibrosis Foundation page gathering information for ourselves, family, and friends. If you were here with us last year this is how our Great Strides Journey started. While grieving the life we planned on for our sweet boy we decided although Nolan was just born, let's be part of this Foundation and their mission -- let's do whatever we can to do... something within our control, which is creating awareness for this disease not many people know about.
As healthy (and adorable!) as Nolan may look on the outside, on the inside he is battling each and every day. After almost one full year of taking on CF, what we know is fighting Cystic Fibrosis is SO HARD, on Nolan and all of us. There have been bi-weekly doctor appointments at UH Rainbow Babies with his amazing Clinic Team. Nolan takes anywhere from 10-14 pills a day to be able to digest his food, performs respiratory therapy twice a day by an oscillating vest and inhaled medicines through a nebulizer and requires a high fat- salty diet. Gaining and maintaining weight has been a very big struggle as CFers burn 1.5-2x more energy than a healthy person.
Not only are there daily medications but there is a lot of fear involved in living with Cystic Fibrosis. Nolan is more susceptible and likely to grow harmful bacteria in his lungs, that does not affect others and the most terrifying thing is these bacteria are EVERYWHERE. A common illness, or a little cough can turn into something much more severe for Nolan that requires rounds of antibiotics and even hospitalization. The hardest part in our first year other than maintaining a healthy weight has been forcefully administering medication he needs in order to just LIVE. Empathy is set aside and although he fights these medications most of the time we get it done and we move on!
In year one we attempted an NG-Tube for dietary reasons, had one emergency room visit, a few scary coughs and rounds of antibiotics, but we had NO admissions in the hospital and for that we are one of the lucky ones. We know that sure enough that day will come when we will be admitted, but for now we celebrate one beautiful roller coaster of a year with our silly duck, dada, and dog loving boy!
We have and I think always will crave the normalcy of just raising a "healthy" boy but we have also learned Nolan is the strongest little guy we know. He can fight this disease each and every day with his "Patrol" and that it is OK to take risks and let him LIVE like any other child. We have been so careful this first year and maybe that has paid off and as a baby he did not necessarily know he missed a vacation, a gathering, simply laying in the grass or playing in the dirt. In the future... will the risk of letting him just be a toddler, actually outweigh our fears and anxiety. One day, he will encounter the invisible bacteria we fear and eat dirt, perhaps even play in a sandbox, or jump in a muddy puddle because for his mental health, for his need to live like any other toddler, we will say YES! (and then immediately sanitize...maybe!).
We are going to have some really hard times ahead but there is no reason to think we cannot have the absolute best times either. He is our little fighter and he is not alone!
We will advocate for what is best for our Nolan… whether it's fighting an insurance carrier for a denied medication, appealing insurance for an RSV antibody vaccine, pulling out an NG TUBE, perhaps putting in a G tube for dietary reasons down the road, we will follow our guts and our hearts and give him the best shot.
There is so much to look forward to as Nolan continues to grow. Each milestone is just as it should be and all the "firsts" in his first year have been so beautiful to see and maybe even more rewarding because he has not had it easy and he never will, but as hard as the days may be sometimes and although we have so many fears, we also have so much hope because of the medications and therapies funded by the Cystic Fibrosis Foundation (CFF). Without this organization the quality of life and the life expectancy of someone with CF would not be where it is today. However, there is still so much to be done and if we keep raising awareness and fundraising we know one day that CF will stand for CURE FOUND, and you can say that too.
NOLAN PATROL IS ON A ROLL!!!!
You can support Nolan!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
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