Ever hopeful — Girl with spinal muscular atrophy still smiling
Aaron Ribble found out just a few months ago, His two-year-old daughter Katie has spinal muscular atrophy, or SMA.
SMA is a genetic disease that affects the motor neurons in the spine that are vital for movement and muscle function. All of those affected with SMA will have some form of impaired mobility. Currently, SMA is the most common cause of infant death. There is no known cure.
Ribble, an employee at University of Idaho Housing, said people with SMA have much shorter life expectancies.
“Some say [Katie] will reach 40 – 50 years old, others say she’ll be lucky if she reaches her teens,” Ribble said. “I’m trying to kind of prepare myself for that, but not dwelling on it. I’m just focusing on every day and taking each day as a blessing.”
Ribble is not a father to be dragged down by sorrow. As soon as he found out that his daughter had this incurable disease, he set out to learn everything there was to know and started trying to raise money to help his little girl.
He learned from Katie’s pediatrician that within the next two years, Katie would be in a motorized wheelchair, and she will eventually not be able to feed or take care of herself. Ribble said he was afraid and confused, but those emotions he turned into motivation.
Ribble has made huge steps in order to raise money to help Katie. He has scheduled a rugby tournament in Pullman which will have eight teams and is sanctioned by USA rugby, which is huge, Ribble said.
Later in the year, he is looking forward to hosting a run or walk where all proceeds will go to helping buy Katie a motorized wheelchair. The step after that is to buy a handicap accessible vehicle, and then ultimately, if funds are available, to build a handicap accessible house.
Ribble had some friends and coworkers help him raise awareness. A friend created a website and a video that talks about Katie’s disease and what Ribble is trying to do about it.
“Donations have been coming in, but not at the rate that I hoped or expected,” Ribble said.
Other than the fundraising events, Ribble has been selling wrist bands and T-shirts with Katie’s logo on it. His main focus right now is his daughter and getting the word out about her situation.
It’s not all about money, however. Ribble said he doesn’t want people to see Katie in her chair and feel sorry for her.
“I want people to say ‘oh my gosh, there’s Katie’ and come up and just be supportive instead,” Ribble said. “She doesn’t want people to feel sorry for her.”
Ribble said Katie is always happy and she has the kind of personality that is genuine and sincere. Whenever her brothers fall down, she stops what she is doing to go help them out, Ribble said.
“When one of them isn’t feeling well and is just laying on the couch, she will go up to them and rub their belly or rub their back or rub their head,” Ribble said. “She is so awesome.”
Claire Whitley can be reached at firstname.lastname@example.org
If you’d like to learn more about Katie, or donate to her motorized wheelchair fund go to www.supportkatie.org.