Help us raise money to find a cure for Cystic Fibrosis!
Team Josie
Fundraising for Pittsburgh Great Strides
Team Josie
Josie was diagnosed with Cystic fibrosis at her 20 week anatomy scan in utero. Although we knew we were both carriers of the gene through prior genetic testing, this diagnosis still came as a huge shock. The rest of the pregnancy went fairly normal up until 36 weeks when we had a scheduled ultrasound to rule out bowel obstruction which can be fairly common in CF patients due to the thickness of their meconium. Unfortunately, that ultrasound did not rule out, but confirmed a bowel obstruction. By the time we had caught it, it was severe and required emergency induction and an immediate trip to Children's Hospital NICU for further testing and treatment. A few hours after arriving at Children's Hospital it was confirmed the obstruction had perforated and immediate surgery was required. Josie required an ileostomy bag for 6 weeks and a second surgery was performed to reverse the ileostomy. Since then, Josie has truly been thriving. We have learned how to manage and handle her daily medications that she needs to help her body function appropriately. We do daily chest physical therapy to help break up the build up of mucus in her lungs and hopefully this year as she turns two she will receive a vest to perform that therapy that will be more efficient at keeping her lungs clear. We are also very hopeful she will start receiving the drug Trikafta this year which is a breakthrough medication that works for her type a gene mutation. This medication has helped tremendously to curve the scarring that occurs in the lungs and pancreas of CF patients preventing damage and tragic health complications as they age. Currently the life expectancy of CF patients is mid-50s but because of this medication that has only been FDA approved for 2 and up since 2022, it is expected for that to continue to improve! We are so thankful Josie will be able to start that treatment but we still hope to develop and improve these available medications and treatments and it also currently does not work for all CF patients and we want every child born with CF to have the chance to live a normal healthy life like we hope and pray our Josie does. In helping us to raise money for the Cystic Fibrosis Foundation the research can continue to be funded so that in Josie’s lifetime we can say that there is a cure for this disease! Thank you to all those who support Josie’s journey. We are so appreciative.
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