“Two of your children have a fatal, untreatable disease – they are dying.” These are the first words Kyle shared on the GoFundMe page for Kennedy and Kinley.
He continued, “That is the news we received for two of our beautiful daughters, Kinley (7) and Kennedy (4), the morning after our third daughter, Kieran, was born.”
“Without warning, we were faced with the sobering realization that our baby girls are dying. Before this disease takes them, Kinley and Kennedy will very slowly lose their ability to walk, talk, eat…and even smile.”
“We have been on a 4-year journey trying to understand what might be causing the developmental delays Kinley has been experiencing.”
“After countless appointments and evaluations with specialists from nearly every medical field, we finally received our answer on June 5th, 2020 – the one we never saw coming.”
“A full genetic screening revealed that not only Kinley, but her younger sister Kennedy both have an extremely rare genetic disorder called GM1 Gangliosidosis. We are forever thankful that baby Kieran is not affected by this wretched disease.”
“Currently, there is no approved treatment or cure for GM1, and it is always fatal in children.”
GoFundMe; pictured above Kennedy smiles