Meet Addie: 2015/16 CFA Youth Ambassador!

Addie’s mom, Jess, was kind enough to write these words about Addie.

Adalyn (Addie) was born March 3, 2010 and has been lighting up Mike’s and my lives ever since.

Addie’s cystic fibrosis story starts at birth. She was born just before 11:00 PM and was taken to the nursery shortly thereafter where she was monitored and showed her first symptoms of Cystic Fibrosis, which was later confirmed in the newborn screening. Addie spent her first night undergoing x-rays and tests unbeknownst to us. Cystic Fibrosis was one of the diagnoses her pediatrician suspected early on due to her symptoms after birth and he immediately went into action to find answers.   Addie spent a week in the NICU due to a fever from an unknown source and to watch for any additional symptoms. We received the definitive CF diagnosis when Addie was released from the hospital at 1 week old.

At two weeks of age we left for the University of Minnesota to meet with their CF Team. As first time parents, we were terrified. Caring for your first newborn can be daunting…caring for one with a chronic, life threatening medical condition for which there is no cure was incomprehensible. Upon leaving the University of Minnesota, we felt a sense of relief…we, at the very least had a plan on how we were going to attack this challenge laid out before us. We were told of new therapies in the “pipeline” that had tremendous promise. Therapies that target the underlying cause of CF that Addie will hopefully benefit from in the years to come.  

Addie’s CF affects both her digestive and respiratory systems.   Her daily regimen is comprised of 33 plus pills and 3 nebulized medications. She begins (6 a.m) and ends her days with a 30 minute airway clearance treatment to help keep her lungs clear of the thick sticky mucus. If she is sick, the airway clearance treatments are increased to 3 or 4 times a day.  Even though Addie appears to be an extremely healthy kid, she does have her struggles. Many do not see the nights spent doing treatments with her during the middle of the night due to prolonged coughing spells, or excruciating pain she endures during one of her horrible tummy aches, missing out on parties or gatherings because she or others may be sick, or just getting frustrated with overbearing parents telling her one more time to wash her hands. While she is, for the most part, compliant with the intense regimen she must follow, she does have her moments when frustration is evident…why she has to do all of this while other kids just get to be kids?

Addie currently receives a quarterly CF checkup between her local pediatrician and the University of Minnesota Cystic Fibrosis Center. She endures many pokes, prods, clinical trials, and tests, without a tear or complaint. She is a brave little girl that is a great source of pride for her parents.

While CF is a big part Addie’s life, it is not something she is going to let define her. She is a spunky 5 year old that is full of life and a bright future ahead of her. Addie is currently a busy kindergartner at St. Mary’s Grade School in Bismarck and loves it. She stays active playing soccer, running, and riding her bike. She loves the spending time outside at pools, parks, and on the trails. We are amazed daily at her unrelenting determination…from climbing a rock wall to learning how to read and write. She loves country music (she is Luke Bryan’s biggest fan), she enjoys doing crafts, playing mom or school (she hopes to someday become a teacher), and anything where she gets to be in charge. She has a personality and laugh that can light up a room.

Addie is the daughter of Mike and Jessie Zimmerman and sister of her ‘siblings’ Morgan (Yellow Lab) and George (Dachshund). She has been blessed with an amazing support system of family and friends that love her dearly and are in the fight against CF right along with her…a support system that we would be lost without and will be forever grateful for the love and support they have shown throughout our entire journey.

It is kids (and adults!) just like Addie that we devote our time to helping here at the Cystic Fibrosis Association. Your generous gifts help us to help them breathe easier!