My name is Kayley Shade and I was born with a disease called Spinal Muscular Atrophy (SMA). A disease that will slowly deteriorate all of my muscles, meaning that I have never walked and am wheelchair bound. My life expectancy was 2 years old; I am now 24, a college graduate with a degree in marketing, and I am the Director of Social Media Marketing for the Sioux Falls Storm.

At 18 months old, I was diagnosed with SMA Type 2. Due to this debilitating disease, I have scoliosis (curvature of my spine) that required me to have a surgery at 7 years old. During surgery metal rods were placed down my spine to straighten and prevent further deterioration. At 9 years old, I was hospitalized for 3 months in the PICU. During that time, I required a tracheostomy, which assists my breathing. Though I have been through many life-altering events, I will never stop fighting.

Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing. However, SMA does not affect a person’s ability to think, learn, and build relationships with others. SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carriers. It is the number one genetic cause of death for infants.

I invite you to join me for the second annual Team Kayley night that will benefit Cure SMA. On February 17th, the Sioux Falls Storm is teaming up with the Taken By Storm Fund and Cure SMA to help SMA research, provide family support (such as an equipment pool) and care packages for newly diagnosed families.

I am looking for local businesses that would be interested in sponsoring a Touchdown Drive, where a business or person would put up a dollar amount for every touchdown the Storm scores. If you or your place of business would like to jump on board, please email me at kayley@siouxfallsstorm.com.

Leave a Reply

Your email address will not be published. Required fields are marked *