On September 20, 2020 at 3:31am, Isaac Joseph Bruner entered our world. Isaac was 7lbs 10oz, 20.5 inches long, and absolutely perfect. We were over the moon excited and instantly in love with this baby boy. We gushed over every sound and every face he made.
Unfortunately, our snuggling and loving on Isaac was cut short after less than 24 hours. Isaac was not feeling well. He was taken to the NICU at The Women’s Hospital in Newburgh. His x-rays showed a block in his bowels. Later, we learned this was called meconium ileus.
After two days in the Newburgh NICU, we were transferred to Riley Children’s Hospital. At Riley, two of the first words our doctor said were “cystic fibrosis.” Very hard to digest. We waited five extremely long days for the official diagnosis. We tried to remain hopeful, but in the back of our minds, we knew. Even with those five days, nothing fully prepared us for the actual diagnosis. Neither of us knew anyone on either side of our family who had been diagnosed. Come to find out, that’s actually how the majority of diagnoses occur.
We both had plenty of questions. David wanted to know if Isaac would ever be able to play sports. I just wanted to know if he would be able to have a somewhat normal life.
The next morning, we met with Isaac’s CF Team. Talk about overwhelming. But we left feeling more hopeful than before. This was our new normal. We were committed to giving our son the best life possible. To us, that meant being as hands-on as we could in the NICU and diving head first into CF research. We learned there are now modulators for people with CF. Since he has the most common mutations (DDF508), Isaac will be able to take Orkambi when he turns 2 and will eventually be able to take Trilafta. Both of these drugs, among others, have offered life-changing results for people living with CF.
Sometimes we joke about how easy it is for us to forget that Isaac has CF. This is what we're used to. We don't know any other way. Isaac is pancreatic insufficient, which means he needs to take enzymes with every meal so his body can properly digest fat. Isaac is also on an iron supplement, acid reducer, nebulizer, and does chest physiotherapy with his vest 2 times a day. Other than that, he’s a total normal 1 year old.
We found a whole new community after Isaac was diagnosed. People from all over have reached out to share their stories or just pray for us. We are incredibly grateful for our family, friends, and community for being so supportive. Our CF Team at Riley has also gone above and beyond. Already, Isaac has shown us just how strong he is. We know he is going to do big things in his long life. We are hopeful the money we raise will build toward the greater goal—that one day, "CF" will stand for "Cure Found."
We raised $17,931 last year. It is my hope that we can beat that amount this year!