During Runway Lights Fashion Show on April 6, 2019, three of our fantastic Variety Kids and Teens will take the runway in beautiful fashions created just for them by Carmen Marc Valvo. They will also be modeling their impressive power chairs, which were provided through Variety thanks to help from Ameren.
Leading up to the fashion show, we’ll introduce you to these amazing children and teens, also known as Ameren Power Kids.
Ameren Power Kid Arie is constantly beating the odds and proving the naysayers wrong.
When she was born, Arie was given just days to live due to several complications. Doctors told her parents to start planning a funeral, but they – and Arie – refused to give up.
“I said, no, I’m going to fight for her,” says Ayla, Arie’s mom.
So, they found the best doctors and specialists to care for Arie. Then, at 18 months old, she was diagnosed with spastic quad cerebral palsy. Arie was again given a shortened life expectancy – doctors said she wouldn’t live past five years old.
“We said we would prove them wrong again,” says Ayla.
And they did, and continue to do so.
Today, Arie is six years old. She is in kindergarten and she’s starting cheerleading in the fall. Her mom says that she is “super happy all the time” and is loved by so many family members and friends.
“Arie is a fighter,” Ayla says.
Arie regularly uses multiple pieces of vital medical equipment to help her keep fighting, including many from Variety St. Louis. She has an activity chair that allows her to sit comfortably as she eats and plays and she has a stander that helps build strength and keeps her healthy.
She is also using a new power wheelchair, provided with help from Variety and Ameren, to get around all by herself. This Zippie ZM-310 is purple, Arie’s most favorite color, and gives her not only mobility, but also independence.
Arie loves her newfound freedom. At school, she can now easily move to and from her classrooms and play with her classmates in P.E. and at recess.
“She can be free, she doesn’t have to count on someone else being her legs or pushing her,” Ayla says. “She can go where she wants to go and explore and be a kid.”
At home, Arie now gets to drive down to her friend’s house and back without the help of her mom. She can also be more active, going to the park and on walks, and playing with her siblings without restrictions.
“It’s awesome to watch the three of our kids play together,” says Ayla. “It’s not Arie watching us anymore. She can take part in our lives now.”
In addition to these vital pieces of medical equipment, Variety has also provided access to equine-assisted therapy as well as the opportunity to participate in our free Adventure Camp program. Camp is Arie’s favorite thing about Variety – it is where she gets to try new things and where she met her best friend, Ella.
“Without Variety, we wouldn’t be able to get the equipment that our daughter so desperately needs,” says Ayla. “We wouldn’t be able to provide a fun and fulfilling life for her. Variety has literally changed our lives, and changed Arie’s life, for the better.”
Arie will be showing off her power chair at Runway Lights Fashion Show on April 6, 2019. You could be there to see her, and other Variety Kids, on the runway. Tickets and tables are available at VarietySTL.org/RunwayLights.