2009 was a year of so many unknowns for our family. Jacob Ryan Shelton was born in an era where testing for genetic diseases was rare and not as prominent as it is now. When Amanda was 20 weeks pregnant the obstetrician’s office found a spot on the baby Jacob’s bowel via ultrasound. This led to a series of tests that included an amniocentesis that ended in the diagnosis of cystic fibrosis. Jacob was born into a room full of doctors and nurses. The NICU team was unsure if he would need their care, but they stood by as Amanda pushed. Jacob’s bowel had ruptured leading to a traumatic delivery for both Jacob and Amanda. Jacob’s abdomen measured 43 cm. It would take two days to determine his bowel was in fact ruptured and he would need emergency surgery to repair his bowel. Jacob spent 2 months in the NICU and underwent 3 surgeries before being able to come home.

Jacob spent the majority of the first year of his life in and out of the hospital. He was the prototype baby for the Smartvest wrap which was new technology for the CF patient. Due to the early treatment with the CPT vest Jacob remained hospital free until his kindergarten year. From 2015-2017 Jacob had tune ups each year. Tune ups are 2-week hospital stays hooked up to three different intravenous antibiotics. 2016 was the worst year. That year his lung function dipped so low the doctors did not believe he could recover. His lung function that hospital stay went from 76% to 107%. Soon after this hospital stay Orkambi was approved for Jacob’s age group. In a hotel room during travel baseball Jacob was able to start his first wonder pill.

Cystic fibrosis is a scary disease and not one that we always like to share openly because Jacob is so much more than CF. Jacob is first and foremost God’s child. Jacob is a son and brother. Jacob is an athlete. Jacob plays football and baseball. Jacob competes at the highest level all while managing his disease.

Jacob’s freshman year of high school he went to camp where he and his trainer managed his medication and treatments. He played varsity football all the way through to the playoffs. He also found himself back in the hospital for another tune up. Teen years and the hospital were a new encounter for all of us. We had lots of facetime calls and friend visits. Jacob managed his own disease this time which left mom and dad sitting in the uncomfortable corner 😉.  Spring led to varsity baseball. Jacob traveled overnight with the team all while managing his CF. Summer allowed Jacob to receive his MONARCH vest. This has once again changed the game in Jacob’s care. This allowed him to do CPT vest therapy on the go. He traveled to Charleston where he won the Shipyard Baseball Championship. He was in the top 10 in most tournaments for his batting this summer season. Football is fun but Jacob’s passion is baseball. His primary position is catcher. When you watch him use his CPT vest it becomes apparent that blocking baseballs isn’t much different.
We now sit in Jacob’s sophomore year of high school. Trikafta has made his disease so much more manageable, but he still does his treatments every day twice a day. Jacob is working towards another great football season while training for spring baseball. In 2009 I don’t think either of us sat and thought we would be helping him train for college baseball. Here we sit in 2024 helping him navigate the recruitment world. He works with his coaches to maximize his nutrition so that he performs at his optimal level.

When we started this CF journey there were so many unknowns and so little funding. To watch our son, pave the way for others within the CF community brings us great joy. We are honored to be ambassadors this year as this feels like a full circle moment for our family. Jacob’s story has already helped so many families within the CF community and we are excited to help the foundation reach its goals.