Community Connections: Living with SMA
Little Rock (KATV) — 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...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.
From being named on the homecoming court in high school, to graduating UCA in 2020 with a degree in speech pathology.
She now works as dyslexia interventionist for elementary students.
"I get to work with people kind of like me. Very similar and I get to show them that I'm different too. It's ok to be different and you can do whatever you want to as long as you put your mind to it,” Ellison said.
Ellison said her students rarely ask about her wheelchair.
"Kids just see the whole picture of a person. They don't really focus on how different you are,” she said.
She's also currently applying for graduate school to advance her education with speech therapy.
She said she'll continue to advocate and normalize her condition online.
"I just want to teach people how to be an advocate for yourself. You don't need other people speaking for you. You can speak for yourself and it's ok to do that,” Ellison said.
If you want more info about the advancements being made for those living with SMA, you can go to curesma.org.
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