Nine months ago, Jay Roden was born five weeks early weighing only four pounds and measuring just seventeen inches. Initially everything seemed fairly normal, albeit premature, but a few days later he was Life Flighted to Primary Children's Hospital where he later diagnosed with a rare genetic disease called Trifunctional Protein Deficiency (Jay is only of of approximately 6 known cases). As part of this deficiency, he was unable to metabolize certain nutrients, which would cause him to have to break down his own muscle for energy, including his heart tissue.
After spending his first months of life in the hospital, he was sent home on a special formula and things seemed more hopeful. His parents came to realizations that he would likely never play competitive sports, but it seemed like he could live a fairly normal life if he could stick to a strict diet. However, after just a few weeks at home, at four months of age, Baby Jay stopped breathing. His dad, Sam, performed CPR and he was rushed to the hospital, and took another helicopter ride back to Primary Childrens.
Jay did make it back home again, but only briefly. At a follow up appointment with his cardiologist, he was found to be in severe heart failure, and ended up spending the last 120 days of his life in the hospital. He continually defied expectations, and fought through adversity, and became his parent's "Warrior Baby." Just nine days before he passed, his heart funtion appeared improved significantly, from severe heart failure to a near normal function (his ejection fraction improved from 26% to 60%). However, that hopeful moment was short-lived, as his breathing became more labored, and ultimately his body couldn't continue. On October 21st, he passed away surrounded by family in his hospital room.
This little boy knew that he was loved.
His funeral will be Wednesday, October 26th. All funds will go to help with funeral related expenses.