Ky’s Uplifting Story: More Than A Disease, More Than A Sport

Some might see Ky Collins as a rebel. A product of his West Texas roots growing up near Lubbock. Ky is stubborn, hard headed, and doesn’t take too kindly to being told he can’t do something. His personality certainly plays a role in what has shaped the 18-year old; being raised by a single mom, Lisa Anderson, was also a factor in his fiercely independent streak.

Ky doesn’t shy away from his propensity to go against the grain and think for himself. It might cause a dust up every now and then, but overall trusting himself more than anything else has been a survival tool for Ky in his fight to extend his own life.

“Am I stubborn? Am I hard-headed … yes. Absolutely. I feel like being stubborn and fighting the odds has served me very well,” Ky said. “Of course there is something wrong with my body and I know it. I live it every single day. But I choose to believe in myself and trust my mindset. If you think you are defeated, then you are defeated. I refuse to be put, or put myself, in what I see as defeated situations.”

Ky lives with an ultra rare disease called dyskeratosis congenita and was initially told when he was diagnosed at the age of four that living past 12 wasn’t likely. This rare disease impacts roughly one in a million people and Ky said he only knows of one other person in Texas who shares a similar diagnosis.

Dyskeratosis congenita falls under the broad spectrum of rare genetic disorders known as telomere diseases. Ky’s version impacts his skin, hair, nails, and his thyroid doesn’t function so he’s required to take a high dosage of medication daily.

“I will never forget the day when I found out about my diagnosis. It was my fourth birthday party and we were at Chuck E. Cheese and [the doctors] called Mom,” Ky said. “14 years later I can remember being so confused. My whole family was crying and I didn’t know what it all meant because I was four, but I remember that feeling to this day for sure.

“What I have learned from that day,  my diagnosis, and my journey has helped me so much. My relationship with God and my mind are the two things I can control and that’s made me the person I am and the person I want to be going forward. If I had to change it—I wouldn’t.”

Ky knows a little about others with telomere conditions through his relationship with the patient advocacy organization Team Telomere. Lisa wanted to help her son and learn how to be the best advocate possible for him. The duo has been connected with Team Telomere for more than a decade.

Team Telomere and Uplifting Athletes have partnered to fund early stage translational research through the Young Investigator Draft. On February 4, Dr. Christopher Sande from the University of Pennsylvania will become the third young investigator from Team Telomere to receive a co-funded research grant during the six-year history of the program.

The intersection of athletics and rare disease is a familiar backdrop for Ky as well. Being from West Texas, football plays a prominent role in the life of most young men at some point. Ky was initially told he couldn’t play because of his rare condition.

“Again me being stubborn. I was told no, so then football became my passion,” Ky said. “My mom was supportive. Eventually I was cleared to try it and I played for more than 10 years because I could.”

Ky was all set to take his game to the next level when the summer between high school graduation and starting college hit Ky hard. He struggled with his academic choices, and to his own shock, the game of football and its value did a complete 180 degree flip.

“I realized, in some respects, I used football as an escape,” Ky said. “Once I was alone by myself I became in touch with a different side of myself.”

Armed with the Nancy Cornelius Scholarship courtesy of Team Telomere, Ky embarked on his college journey last fall with a completely different outlook and focus. The tough kid living with a rare diagnosis, who knows his medical clock is ticking, walked away from the sport that provided him with an escape because he wanted to forge a new path forward. For himself.

Academics and obtaining his college degree are what matter. And this time it didn’t take somebody telling him he couldn’t do it in order to discover his passion.

“A year ago I would have laughed at anybody out of the room who suggested I would make this big of a life changing choice,” Ky said. “Football consumed me. And that’s not healthy. My disease is part of me, but I don’t allow it to consume me. I miss football. But walking away wasn’t hard.”

Learn more about Team Telomere and the Young Investigator Draft by visiting Limited in-person tickets are still available or register for free to watch the livestream in real-time!