Libby Hope was born November 23, 2022 at 4:06 PM - two minutes before her twin sister Layla Grace. The girls were supposed to be identical, but when the embryo split there was a spontaneous mutation of Libby’s ATP7A gene affecting her body’s ability to process copper. 

Libby was officially diagnosed with Menkes Disease in August of 2023 and passed away on October 23, 2023 - one month shy of her first birthday - after putting up a grueling fight that started from day one. 

Twenty-four hours after being born, Libby was admitted into the NICU after registering consecutive low temperature readings. After several days in the NICU she was allowed to come home, but we stayed on high alert monitoring her temperature. Several days within the first month we had rushed her to doctors’ offices after registering low temperatures at home and knowing something was off. 

While watching her sister develop as a healthy child does, Libby lagged behind at every milestone, further pushing the fact that something was wrong, but we were unable to identify the cause. It wasn’t until several months later in August, a second round of genetic testing revealed a diagnosis. 

Within two weeks, we took Libby on a road trip to Columbus, Ohio to visit Dr. Stephen Kaler - one of the world’s leading medical experts on Menkes Disease - and enlisted Libby in a clinical trial to try and mitigate the disease’s impact on her development. 

On October 13, Libby was admitted into the hospital after contracting COVID-19, Rhinovirus, and Parainfluenza. Ten days later, her mesenteric artery ruptured and she passed away after surgery. 

We remember Libby for her beautiful blue eyes and smile that would light up the darkest of rooms. This world was robbed from being able to meet her, but we know that Libby Hope has and will continue to make an impact on the world.