Today he is a happy young boy-giggling and playing with his older brothers, but four-years ago Conor's life was very different. He was a newborn infant in a catabolic state and hooked up to numerous IVs after being diagnosed with a condition where the liver cannot metabolize protein, forcing the body into a metabolic crisis.
The proteins become toxic to the bloodstream, causing brain swelling, seizures, and even irreparable brain damage. For newborns, proper nutrition is essential to growth and development and getting nutrition was nearly impossible for Conor because he was unable to eat or drink anything, even milk or regular formula so for almost four years his only nourishment came from a liquid medical formula.
Conor’s parents and doctors determined that the only option for him to have a healthy life would be with a liver transplant and he was put on the national transplant list. In November of 2016, he underwent surgery for the liver transplant. Although he was left with a huge abdominal scar, this new piece of liver provided him with the essential protein-metabolizing enzyme he lacked. While it seemed like the transplant was the perfect solution, there is never a guarantee that the body will accept a new organ, and he continued to face many setbacks and complications, including a complication that almost took his life. Conor continued to walk bravely on a double-edged sword, and his strength, and his family’s love and patience, lead to a slow but sure stabilization in his lifestyle.
During one of his many hospitalizations, Conor’s doctor recommended his family consider contacting Make-A-Wish. Everyone knew he loved the beach and marine life, especially sea turtles and fish, and he was looking forward to swimming with the dolphins and seeing a coral reef for the first time. Ultimately, Conor asked for a beach trip to the Florida Keys!
After months of planning and eagerly counting down the days until his wish would come true, Conor and his family were ready for their journey. In February of 2018, they headed to Key Largo where, among other activities, they visited the Sea Turtle hospital, swam with the dolphins and spent quality time together without worrying about the next doctor visit or hospital stay.
His Mom described their wish experience as “an overwhelming sensation of being normal again.” They felt pampered from start to finish and“she never realized how much this trip would impact Conor. They had not been able to vacation anywhere outside of the Delaware beaches prior to Conor’s wish trip and the experience gave her hope that they will be a regular family again, and able to do regular things like traveling and vacationing together. After everything this family has been through in the past 4 ½ years, they were able to have a nice dinner every night and watch the sunset together and make cherished memories.
Conor’s scar will always be a reminder of the battles he has fought and overcome, and his wish journey is a reminder of the love and support that surrounds him. His experience will give him the strength to bravely face any other curve balls life throws his way.