Eamonn’s CF Story

When Eamonn was born in 2006, we were on top of the world – two beautiful little boys – we could not have asked for anything more. Our “perfect world” picture quickly changed, however.

Eamonn did not pass his first stool (meconium) within 24 hours and we were told that this was a life-threatening issue which needed to be addressed immediately. Our world-wind journey was beginning. Within a few hours, Eamonn was airlifted to Westchester Medical Center where he underwent emergency surgery to the address the blockage and an ostomy bag was placed to allow the intestine time to heal. While we were being taught how to care for an ostomy bag and learning that ANY hospital stay is a roller-coaster of emotions, Eamonn was given a definitive diagnosis of cystic fibrosis. Our lives would never be the same again.

We quickly adjusted to ostomy care and his need to have pancreatic enzymes with every feeding. The ostomy bag was removed 5 months later when he underwent a reversal surgery to reconnect part of his intestine during another roller-coaster hospital stay. The enzymes were here to stay though.

Daily breathing treatments were soon added as part of his daily routine – little did we know we were establishing Eamonn’s “regimen” that only grows over time. The next few years seemed pretty good however and we were quietly thinking to ourselves that we were lucky and that Eamonn’s CF seemed to be on the mild side of the CF spectrum. That changed when Eamonn got to 1st Grade. When Eamonn had a seemingly “typical” cough that we all could get and clear within a few days, we soon found out, this is not so easy with CF. He couldn’t clear this cough due to the excessive mucous in his lungs and airway. Several rounds of oral antibiotics couldn’t get though the mucous to get to the infection and he needed to be hospitalized and have an IV placed to deliver more powerful antibiotics to clear out the infection. This, unfortunately became the new “typical” – Eamonn has since been admitted to the hospital almost annually since then, including twice in 3rd Grade.

Each CF “exacerbation” (part of the new vocabulary we were picking up) presents as Eamonn becomes progressively less energetic, coughing more, eating less, losing weight and in general losing that spark and sass that makes him shine. Hospitalizations required Eamonn to be placed on 14 days of IV antibiotics, surgery with general anesthesia to place the central IV line, his breathing treatments increased from one to 3 times per day, and a refocus on high fat, high salt diet to try and get him back to his normally energetic and sassy self.

In most every way, Eamonn is just another boy who wants to play sports and run around with his friends – it is just a little tougher for him some days (like when he still wanted to play with his basketball team with a diagnosis of pneumonia!). Eamonn has a smile and personality that light up a room. His positive spirit and energy are contagious and he fights Cystic Fibrosis daily without ever complaining, resisting treatments, or fighting doctor appointments. He seems to know that he needs to do these treatments and exercises daily to stay healthy, try to make his lungs stronger and fight the fight he’s in.

When Eamonn was born, we knew little about Cystic Fibrosis other than it was a chronic, genetic disease that impacts the lungs. We now know that Cystic Fibrosis also effects the digestive system, can cause CF related diabetes, severe liver damage and can lead to the need for a double lung transplant. We recently learned there are about 1700 different gene mutations that cause Cystic Fibrosis. There is not yet a cure for Eamonn’s gene combination. Amazingly, 55% of individuals with certain gene combinations do have a drug that fixes the defect at the cellular level that causes their CF. These drugs are considered their cure. Literally. Research and development of these drugs were spearheaded and funded by the Cystic Fibrosis Foundation.

We are still waiting and hopeful that Eamonn’s cure is in development now and will be discovered in the years to come. While we wait, we are more and more concerned about the health of his lungs and do what we can to keep his young lungs healthy. We truly feel like we are in a race against the clock to find a cure for Eamonn. And while it’s terrifying, we are so thankful for the Cystic Fibrosis Foundation.