Team Josie
Josie was diagnosed with Cystic Fibrosis at her 20 week anatomy scan while in utero. To find out that early is much more uncommon. We are so thankful to have know because that led to some follow up ultrasounds, which ultimately ended in needing an emergency induction at 36 weeks do to a CF related bowel obstruction. She was immediately transferred to Children’s Hospital where they proceeded to find a perforation and Josie needed an emergency bowel resection 12 hours after birth. She then spent the next 8 weeks in Childrens NICU with many ups and downs and an additional surgery to reverse her Ileostomy. After that bumpy start and getting adjusted to the new routine of having a child with CF, Josie has continued to amaze us and is the spunkiest little fighter. She is the most popular little girl at her CF clinics and takes all of her medications like a champ. When she turned 2 this past July, she started her daily vest therapy to help keep her lungs clear. She also started the breakthrough CF medication called trikafta, which is a gene modulator which helps her body to function “normally”. This medication will be life changing for her and we are thankful to be apart of this first wave a CF patients able to start it so young! Josie loves playing with her sisters and brother. Besides the few extra things we have to do to help her body function correctly she is your average crazy toddler and makes us laugh everyday. We are so proud of how far she has come in just 2.5 years and how well she handles her extra treatments and doctor appointments. With participating in the Great Strides fundraiser, we hope to help fund the research for Cystic fibrosis so that they can continue to develop these medications for Josie and all CF patients. We will not stop until there is a cure. Thank you to everyone who will help us to get there.
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