Our Great Strides Story
Jody Sheehan
Fundraising for Pittsburgh Great Strides 2026
Jody Sheehan
Our son, Boone, was born via emergency C-section because of abdominal ascites causing respiratory depression. An exploratory abdominal surgery on day 1 of life revealed Boone had suffered a meconium ileus, perforating his colon. This required ileostomy creation to allow Boone’s intestines time to heal. As we awaited answers as to why such a major event occurred in utero, a diagnosis of Cystic Fibrosis became the missing piece of our puzzle. This came with much surprise to my husband and I that we were both carriers of this genetic disorder.
Cystic Fibrosis is a genetic disease that affects the lungs, pancreas, and other organs. It is progressive, meaning that it gets worse over time, and requires preventive measures to be taken daily. We prioritize respiratory precautions by avoiding germs and performing chest physiotherapy twice a day. Monitoring Boone’s nutrition and growth has been another priority since he was born, which was intermittently complicated by having an ileostomy for 11 months. We administer supplemental digestive enzymes with each meal and snack Boone consumes.
Boone’s first year was nothing short of eventful. He underwent a total of 6 abdominal surgeries before his ileostomy was finally reversed—an encounter we prayed endlessly for. While Boone had his ileostomy, we dealt with accounts of severe skin breakdown, “dumping” syndrome requiring a need for TPN, and a prolapsed stoma months prior to reversal.
Boone’s first birthday brought us so many moments to celebrate—our sweet baby boy being healthy, no longer having an ileostomy, and the opportunity to start the first CFTR modulator—Orkambi. This gave us so much hope for Boone’s future with CF. Fast forward 3 months, Boone’s first bloodwork results showed elevated liver function tests, and we were directed to stop his Orkambi. While this was not what we wanted to hear so early into the course of treatment, we continue to trust God and trust the research. This, among many other reasons, is why we choose to participate in Pittsburgh Great Strides and support the Cystic Fibrosis Foundation. We feel promised that the future holds amazing advancements for Boone and others living with Cystic Fibrosis.
Cystic Fibrosis is a genetic disease that affects the lungs, pancreas, and other organs. It is progressive, meaning that it gets worse over time, and requires preventive measures to be taken daily. We prioritize respiratory precautions by avoiding germs and performing chest physiotherapy twice a day. Monitoring Boone’s nutrition and growth has been another priority since he was born, which was intermittently complicated by having an ileostomy for 11 months. We administer supplemental digestive enzymes with each meal and snack Boone consumes.
Boone’s first year was nothing short of eventful. He underwent a total of 6 abdominal surgeries before his ileostomy was finally reversed—an encounter we prayed endlessly for. While Boone had his ileostomy, we dealt with accounts of severe skin breakdown, “dumping” syndrome requiring a need for TPN, and a prolapsed stoma months prior to reversal.
Boone’s first birthday brought us so many moments to celebrate—our sweet baby boy being healthy, no longer having an ileostomy, and the opportunity to start the first CFTR modulator—Orkambi. This gave us so much hope for Boone’s future with CF. Fast forward 3 months, Boone’s first bloodwork results showed elevated liver function tests, and we were directed to stop his Orkambi. While this was not what we wanted to hear so early into the course of treatment, we continue to trust God and trust the research. This, among many other reasons, is why we choose to participate in Pittsburgh Great Strides and support the Cystic Fibrosis Foundation. We feel promised that the future holds amazing advancements for Boone and others living with Cystic Fibrosis.
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