Kayley’s Story

Kayley was diagnosed with Spinal Muscular Atrophy at just 16 months old. She never walked or crawled therefore has fully relied on a motorized wheelchair since a very young age. As the spinal neurons or nerves to those major muscles are weakened, she also fights a compromised immune system. For Kayley, the common cold can turn into pneumonia and result in collapsed lungs a lot of times resulting in a hospital stay.

She has scoliosis (curvature of her spine) that required her to have surgery at 7 years old. During surgery, metal rods were placed down her spine to straighten and prevent further deterioration. At 9 years old, she was hospitalized for 3 months in the PICU. During that time, she required a tracheostomy, which assists her breathing. At the age of 26, Kayley had a intrathecal portacath placed to start receiving the first ever treatment for SMA called Spinraza. 

Far outliving her far-too-short given life expectancy of just two years old, Kayley is now 27 and a college graduate. Kayley attended Southeast Technical Institute in Sioux Falls, SD graduating with a double major in Marketing and Marketing Design. While still attending school, she was invited to intern with the local Sioux Falls Storm indoor football team with the Digital Media team. After the season ended, Kayley was offered a full-time position with the Storm as their Director of Media Relations. A few duties of this new career, but far from everything, include writing the press releases for the team, perform live social media broadcasting during each game, creating graphics and also continued work on the team’s website.

In her free time, Kayley enjoys spending time with family and friends and listening to music. She is a Texas Longhorns and Dallas Cowboys fanatic and loves attending those games when possible. Kayley has huge hopes that one day there will be a cure for SMA. Although she has been through many life-altering events, she’ll always make her days count.