Thank you for helping us reach a cure.
Here’s a bit about our beloved kiddos and a peek
into our families’ journey with CF.
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OAKLEY RAE
The Doyles
After three very long weeks with a very hungry and lethargic newborn, Oakley Rae was diagnosed with Cystic Fibrosis. Her newborn screening came back with a double deltaf508 gene mutation on the Cystic Fibrosis transmembrane regulator. This deltaf508 mutation is at least one of the two mutations, in over 80% of all CF cases. Oakley’s being a double deltaf508 makes her case more severe as there is a double mutation of the same gene. The news came from our primary care doctor who then sent us off to Children’s in Minneapolis for testing and confirmation.
There are no words to describe the moment you receive such a diagnosis for your child. There is no guide on how to deal with the feelings, the mourning, the pain, or step by step instructions on how to proceed. Just a pamphlet and some encouragement from a team of doctors.
From that day on, our daily routine changed greatly with our baby girl. Days filled with sanitizing, intense isolation from people and a mass amount of worry with every little cough or sniffle. Salt is dosed in bottles and put on food, enzymes are given before each meal or drink to help her absorb the nutrients in what’s ingested, and a large dose of vitamins is given as well. Oakley takes an antibiotic three times a week to help reduce inflammation in her airways, an inhaler if she is winded or coughing. A steroid or nebulizer is on hand for extra breathing support. These are things we continue to do each day at nearly 2 years old.
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Looking to the future, there are many more medications that will be added to our regimen as they become more age-appropriate. These day-to-day things have become a big part of our everyday life. Oakley is strong like an oak tree, with the most vivacious and humorous demeanor. She takes each poke and prod like a champion during her appointments and is truly a one in a million child. We are blessed for all she brings to our life each and every day. Many days it feels like a lot (and it is), but we are grateful for the advancements in medicine that continue to lead in our sweet girl’s favor. Along with these advancements, there are so many blessings from so many generous people who care to support this cause. Words will never be enough to show our appreciation.
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LUCAS
The Lees
Lucas means “bringer of light” and boy, has he done so for our family already. With his angelic voice, bouncy blonde curls, and piercing blue eyes he’s a sweet, thoughtful, and thrill seeking two-year-old. On occasion he resists his twice daily vest therapy, saying “it hurts” but also it’s the only time of day he is restricted from running all over on his tippy toes – other than nap time, thank goodness for nap time! He eventually settles in and gets creative jumping off the machine, having fun with his vibrating voice as it shakes him, climbing on his dad and enthusiastically cheering on Trash Truck– his favorite show, a tribute to his uncle, and only TV time. As his parents, we love this boy fiercely and enjoy getting to know his light. We also know in our hearts he will bring this special light to this world in a big way.
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As Lucas’ mom, Christy, a health care attorney, has experienced a new and frustrating side of the industry advocating for his care, enrolling him in a clinical trial, and fighting for insurance coverage of his extremely expensive daily therapies and prescription drugs. Through the research trial Lucas had the opportunity to take a lifechanging drug earlier in his life than other CF patients. The drug has gotten Lucas’ pancreas to function on its own – a first for his doctors – which has meant he’s been enzyme free from eight months old. We’ve seen up close the difference the ongoing research can have for CF patients. We can feel the promise of a cure with our fingertips, if we just reach far enough, we know life changing treatments will come to all those living with CF during our lives.