During their second pregnancy, Jack’s parents found out that they were carriers of the cystic fibrosis gene, meaning there was a 25% chance that their children would be born with this chronic illness. They were blessed with two healthy daughters before Jack was born on July 2, 2009, and tested positive for cystic fibrosis. Jack showed his strength and resiliency from the start. Following a complicated pregnancy, Jack was born at 35 weeks and spent a month in the Neonatal Intensive Care Unit.
The first five years of Jack’s life were typical, outside of his daily vest, nebulizer and medication regimen. It wasn’t until a few months after his sixth birthday that his parents started getting concerned about his health and the frequency of infections. He was hospitalized three times in five months. A bronchoscopy revealed a serious bacterial infection in his lungs that required an aggressive treatment plan, including multiple IV and oral antibiotics daily and nutritional support through a g-tube. As Jack’s health deteriorated, his CF team at Cardinal Glennon and the Footprints Palliative Care team were by their side to make sure his family had support and resources to ensure his quality of life was the best it could be.
Fast forward seven years and 14 hospitalizations later, Jack is now 13 (as of July 2) and has not only survived a devastating diagnosis but is now thriving and living his best life. Thanks to his dedicated CF team, who never gave up on him, and new treatment options, Jack’s lung function, energy, and overall health have improved significantly over the last few years. Due to the aggressive antibiotics to treat the infection, Jack lost his hearing. Once again, his amazing team of specialists helped walk the family through their hearing loss journey. Jack started with bilateral hearing aids but eventually needed a cochlear implant on one side to give him the best hearing outcome.
Jack has gone from being admitted to the hospital multiple times a year to only once a year. Jack’s mom, Deidre, said she thinks he actually likes to be admitted so he can see the familiar faces of nurses and respiratory therapists, along with his favorites – Shining Star School, Music Therapy and all of the special attention he gets from the Child Life Specialists. Because there is such comfort, love and trust with the staff, he walks into the hospital with confidence, like he owns the place.