Raise funds – 9 yr old Kinley & 7 yr old Kennedy

The Colorado Eagles annual “Pot of Gold” fundraiser returns.

The Eagles will be raising funds for 9-year-old Kinley and 7-year-old Kennedy Harrison of Arvada. Kinley and Kennedy are diagnosed with GM1 Gangliosidosis, an aggressive disease where the body does not produce adequate enzymes to break down certain molecules. Instead, these molecules collect on the brain and spinal cord, leading to widespread neurodegeneration.

The Harrison Family Story:

“Two of your children have a fatal, untreatable disease - they are dying”

That is the news we received for two of our beautiful daughters, Kinley (9) and Kennedy (7), 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 four-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.

Right now, Kinley and Kennedy are in a relatively “stable” state in their disease progression. They can still walk independently and are verbal, though both are experiencing speech issues that make them hard to understand. Looking at them, one would never know they both face such a grave fate, but there will come a day where each of them will no longer be able to run outside with their friends, jump on their trampoline, or tell their baby sister “I love you” if no treatments are developed.

Life expectancy for the type of GM1 Kinley and Kennedy have is difficult to predict, but estimates range anywhere from mid-childhood (10-15 years old) to the early twenties. We are hopeful that both Kinley and Kennedy have many more great years ahead of them at a quality of life that they both deserve. There is no way to know at what point the disease will firm its grip on Kinley and Kennedy - we are in a race against time.

There are several treatment clinical trials coming up for both substrate suppression therapy and gene therapy through drug companies, universities, and the NIH. In fact, some believe a cure is imminent - it simply needs the support and dollars to advance.

This is the 10th annual Pot of Gold fundraiser that has raised nearly $400,000 for local Northern Colorado families in need. All funds raised will be donated to the Harrison family this year.