A Maumelle woman living with a rare genetic disease is sharing her experiences on her Youtube channel of what it’s like living with a disability. She hasn’t let it hold her back in any way and she hopes those online and the kids she teaches will see that anything is possible.
“Hey guys, it’s Khi. Welcome back to the channel. How are you doing today,” 24 year-old Khi Ellison said as she started a video blog from her home. “Some of you may or may not know that I’m in a wheel chair.”She said her goal is to show others what life is like for her, brining not only awareness, but normalcy.
“I basically just document my life with SMA and try to show people that just because I’m in a wheelchair and I am disabled that I’m not any different than you are,” Ellison said. SMA stands for Spinal Muscular Atrophy, a rare genetic disease affecting the body’s muscles. Khi can’t walk, she sleeps on a ventilator, does breathing treatments and takes an at-home treatment for SMA called Evrysdi.
“I’ve gained more stamina and definitely more fine motor skills,” she said. Through all of her difficulties she continues to achieve.