over $200,000 raised
Mission Statement: To provide funds to support advances in cystic fibrosis research and provide financial and emotional support to cystic fibrosis patients and families while raising awareness in our community.
William Robert Anderson was born January 28th, 2018. He was our healthy 6lb 15oz baby boy, and he appeared to be doing well in his first two weeks of life despite small struggles with weight gain. His sluggish weight gain was not extremely abnormal for his age, so we were not on high alert for a problem; therefore, we were completely shocked with the abnormal results of Will’s newborn screening. He presented with the two most common mutations for cystic fibrosis- two DeltaF508 genes. Will started pancreatic enzymes immediately to assist with milk absorption and weight gain. Will’s cystic fibrosis diagnosis was confirmed a few weeks after with the gold standard sweat test.
Will’s current treatments includes two thirty-minute chest physiotherapy (CPT) sessions and taking over 30 pills a day. We do our best to keep him healthy, gaining weight, and lungs clear. At this point in his life, Will knows he is a little different than others because he has cystic fibrosis. We tell him he is a champion and a CF warrior, and he beams with pride. We know the road ahead will not be necessarily easy for Will, but with God’s faithfulness and our wonderful community supporting him, there is nothing he can’t do.
We found out we were expecting our second baby in December 2020. This baby had a 25% chance of having CF just like Will. The advances in research in the CF community provided us with peace, no matter the outcome. Due to advances in genetic testing, we were able to find out that our baby had a very high probability of having CF early in the pregnancy through a maternal blood test. This allowed us to prepare our minds for what was ahead. On August 18th, 2021, our second sweet miracle, Wade Darren Anderson, was welcomed into the world.
Like his brother, Wade had little to no immediate signs of CF; however, since we had cared for a CF baby before, we knew, even before genetic testing resulted, that Wade was a lot like his big brother. He tasted salty and his diapers were “different.” Thankfully for the advances, we were able to start CF treatment with Wade almost immediately. When his sweat test confirmed his diagnosis, we were not upset, we were just ready to give him the best life possible! Wade also takes medication before every feeding, and we perform manual chest physiotherapy (CPT) twice a day until he is big enough to get a vest like his brother.
Our fears for our son were high in the infancy of Will’s diagnosis. I (Ally) had experience with cystic fibrosis patients while working with them in a post-lung transplant in the cardiothoracic ICU as a nurse. Now as a nurse anesthetist, I understood the destruction the complex disease could perform on the body. After a lot of prayer, our focus changed from the potential negatives ahead to “how can we make the best life for Will?” We found so much hope in the advances in research and drug development within the Cystic Fibrosis Foundation. We found emotional support within the cystic fibrosis community and immediately were blessed by the outpouring love of our local community.
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We participated in our first Great Strides event for the CF Foundation in 2018 as team God’s Will. In our first-year friends, family, and community members donated over $34,000 to the Cystic Fibrosis Foundation in Will’s honor. We quickly realized how wonderful of a support system we were surrounded by and decided to hold an annual benefit to raise money for our Great Strides team. Through the hard work of our volunteers, Fiesta for CF raised over $50,000 in 2019. In 2020, we stepped up our fundraising game and raised over $100,000 at Cheeseburgers in Paradise, for a cure! Unfortunately, the pandemic required us to skip the event in 2021; however, we were still able to raise over $24,000 through donations and t-shirt sales.
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God’s Will and Wade CF Foundation was officially founded in September 2021. Our goal is to continue fundraising for research and drug development through the CF Foundation; while also having the flexibility to help CF families in need.
Meet Will & Wade
Will's Story
Wade's Story
Will and Wade were hand-picked to be brothers and God has already made it apparent in many facets of their life. One neat fact is their date of births (not planned) are connected. Will’s birthday (1.28.18) and Wade’s birthday (8.18.21) are mirror images of each other. We also like to say “where there is a Will, there is a Wade!”
