Our ALTEN Technology colleague in Denver, Kyle Harrison, has two (of four) young daughters with an extremely rare, fatal disease, GM1 Gangliosidosis. They found out this terrible news within hours of their third daughter being born.

GM1 is an ultra-rare neurodegenerative lysosomal storage disorder with no treatment or cure. It primarily affects children, but it also has an adult onset type. Unfortunately, it is always fatal.

Kinley & Kennedy have Type II GM1, meaning they hit their early milestones and were like any other kids (Kinley was learning how to read and write in kindergarten). Since then, both girls have regressed in their physical and cognitive abilities. Today, both girls use assistive communication devices as they have difficulty speaking (though they have a lot to say ). There are lots of falls, bruises, confusion, and now more signs of seizure activity.

Eventually, GM1 will take their ability to talk, walk, eat, and even smile. And one day, it will take their lives.

Until then, the Harrison family lives with relentless hope that someday a treatment or cure will be found, not only in hopes to improve Kinley and Kennedy’s quality of life but so no other child or family must go through the realities of this wretched, cruel disease.

Kyle’s family is hosting their 4th annual Cure Kinley and Kennedy golf tournament fundraiser on 8/4 in Denver. Last year, we set a goal of raising $5,000 to help with the fundraiser, and we ended up raising $10,625! Let’s see if we can beat that this year and surprise Kyle with another contribution to their cause from his colleagues in all our US offices. The ultimate goal, of course, is to fund the cause with as much money as possible, but it’s also to show Kyle compassion and support from the community within his work home that he enjoys so much. Sometimes, knowing that others are aware of what you’re going through and supportive can be helpful amidst the daily battles.