Reagan's Royal Court

Our Princess, Reagan Elaine was born on January 9, 2016 weighing 7 lbs. 12 oz.  She was a happy, healthy, beautiful baby girl.  As the first week progressed Reagan wanted to eat constantly, yet continued to struggle to gain weight.  We were going to the pediatrician on a daily basis for weight checks.  On Thursday, January 21, 2016 we received a phone call from Dr. Austin (Reagan's pediatrician) with the results of her newborn screening.  Reagan's screening had come back showing she was positive for Cystic Fibrosis. 

The next step was to have a sweat test and chest x-ray performed at Brenner Children's Hospital to confirm the diagnosis.  Due to an incoming snow storm we would have to wait until Monday, January 25 to have these tests. That Monday morning we braved the cold and ventured to Brenner's for these tests.  The sweat chloride test and x-ray confirmed that Reagan has Cystic Fibrosis.  After the results were presented to us by Dr. Hayes we sat and talked, cried, and listened to her and Nurse Kay give us a “crash course” in what Cystic Fibrosis is.  It was a lot to take in that first day and we have learned so much more over the past two years through the team at Brenner’s, friends we made online, and the Cystic Fibrosis Foundation website (https://www.cff.org). 

We meet with the CF Team for regular visits every 3 months. The appointments can last upwards of 3 hours.  During the visits we meet with any or all of the following: nurse, pulmonologist, nutritionist, respiratory therapist, physical therapist, case/social worker. 

Reagan is also pancreatic insufficient, which means she takes Creon (special enzymes which help her body break down and absorb her food) before every snack or meal. She takes 1-2 with snacks and 4-5 with every meal.  If you do the math Reagan takes aproximately 18 enzymes each day which is 126 each week, 504 each month and around 6,048 each year.  It’s crazy to think about how much medicine she takes each year, however we are grateful for this medicine because it sustains her life.  In addition to the enzymes she takes two vitamins (MVW Complete multivitamin and Vitamin D) along with Claritin for allergies and a probiotic.  

To help keep her lungs healthy she uses the HilRom Vest airway clearance system twice a day for 20 minutes at a time.  That comes out to 243 hours a year just to stay healthy.  If Reagan gets sick she has to increase to 4 treatments a day, which is a1.5 hours per day.  Prior to her vest treatment she receives 2 puffs of albuterol from her inhaler.  This combination treatment helps open her airways and breaks up any mucus sitting in her lungs.  

January 20, 2022 was the day we have been waiting for. In October 2019 the FDA approved a new drug for people age 12 and older that have Cystic Fibrosis. It has been called “the miracle drug”. On June 9, 2021 it was approved for children starting at age 6. Reagan turned 6 on January 9. After insurance approval, placing the first order with the specialty pharmacy and having it shipped from Memphis, TN it finally arrived! Reagan took her first dose on January 21, 2022. We are more than thrilled. The money raised from CF Walks, FB Fundraisers, etc. really does make a difference!!!

There are approximately 30,000 Americans living with cystic fibrosis. Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking in May, I am helping add tomorrows to the lives of people living with cystic fibrosis.  Without the research being done by the CF Foundation, Reagan would not be doing as well as she is and have such hope for the future.  The CF Foundation remains the only source of funding for research for Cystic Fibrosis – there is no federal funding. 

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This year, our family is participating in the local Great Strides walk on Saturday, May 4.  Our team goal in 2024 is $5000.  Will you join us? Support us by making a donation to our Great Strides fundraising campaign today!  Your monetary gift to the CF Foundation is 100% tax deductible.  We also welcome you to join us at the walk on May 5, 2024! 

Thank you for any and all support you can provide,
Ben, Ryanne and Reagan Wallace