Emmett Cooper Monaco was born on February 28th 2016, coincidentally, and unknown to his parents at the time, on National Rare Disease day. Emmett’s first 2 years of life were that of a healthy newborn and toddler. Learning to grasp toys, play, babble, crawl and do all the things a young boy learns. At 2 years old his parents Nikki and Joe started noticing some changes in his development and activity, as his normal functions of walking and talking began to disappear. This began a long journey of diagnosis as Emmett’s motor skills and sensory functions began to deteriorate. Emmett, we found out, had a rare genetic disease called Krabbe, a type of Leukodystrophy. Krabbe is detectable through genetic screening, but is not part of the regular screening a newborn undergoes. It can also be treated if caught early, but often goes undetected before it is too late. It affects about 1 in 100,000 individuals in the United States.
The Monacos strove to live as normal a life as possible and to afford their son every experience of life they could, while continuing in prayer and hope for new treatments, a cure, and healing. Emmett’s day-to-day was filled with the normal anxieties of childhood, including interactions with family, friends, and caregivers, decisions about what movie to watch, and conversations about what his brothers were doing. Emmett had opinions about most things, even though he was only able to communicate through yes and no eye-blinks. Having lost the function to talk did not hamper Emmett’s personality, love for his family, and desires for life. He was a brave and wonderful little boy with so much to offer everyone who had the privilege of knowing and caring for him.
2021 saw more ER visits for Emmett and increasing strain on his body. In January 2022 he was admitted to Randall Children’s Hospital and passed on January 17th, 2022. He was with his parents, who stayed by his side through the end. Emmett Cooper Monaco, you are already missed. Your family is thankful through the sorrow, that you are now with Jesus, and your suffering has been swallowed up with joy in heaven.
Throughout this long and often very difficult struggle with Krabbe, Emmett’s family did not give up hope. They continue to fight for other children coming into the world with Krabbe who deserve to be screened for this too-common disease and deserve a chance at treatment and a full life. Thank you all for your support, whether through prayers, the care you give the family, and the voice you have in supporting all families who fight for the lives of Krabbe kids.
