As her mother Jennie explains it, six-year-old Anna Riley simply enjoys being a kid. Piano, singing, crafting, girl scouts. Those are just a few of the passions that Anna has developed at a young age.
“Anna loves all things ‘girly’ and loves dressing up and being a princess,” Jennie says.
Anna was born with a rare skin condition called Harlequin Ichthyosis, a genetic disorder that causes hard, thick skin to cover most of a baby’s body. Anna produces skin at an accelerated rate, and proper treatment is needed to prevent it from drying and cracking.
Literally minutes after being born, Anna required immediate care. Her condition also required Jennie to quickly learn about the disorder and the measures that needed to be taken to ensure her daughter could live with her condition, as some newborns with harlequin ichthyosis do not survive.
Jennie told People in 2019, when Anna was not yet two years old: “I decided to stop work and stay home with her full time to give her everything she needs, and I couldn’t be happier with my decision. She has a lot of challenges, but she never complains, and neither do I.”
Those challenges include a three-hour bath every morning to help remove extra skin. When she was three, Anna was diagnosed with JIA (juvenile idiopathic arthritis), which affected her ability to walk. By age four, she began to rely heavily on a wheelchair for mobility.
Last summer, after a sickness that rendered Anna unable to walk for months, Jennie considered a powerchair. At a recent Abilities Expo, while searching for the right device, they came across the Pride Mobility booth.
“Anna tried some wheelchairs that she could drive and immediately fell in love with the Jazzy Carbon,” Jennie said. “The change in her was immediately obvious and the independence it gave her from the very moment she got in was apparent to everyone that knew her.”
It wasn’t long before Anna and Jennie brought home the Jazzy Carbon folding power wheelchair. With its lightweight frame and intuitive operation, it’s helped her create memories and forge new experiences that previously may not have been possible.
“We have gone to the zoo, rail trail, and shopping with the chair, and she absolutely loves driving it,” Jennie said. “I had no idea how much she needed the independence it gave her. She was even able to use it in the house when she was having a flare the other day.
“I had always thought a powerchair was only for people that can’t walk at all, but independence is so much more valuable than I can put into words.”
With her Jazzy Carbon, Anna is able to enjoy the outdoors, something that can be quite difficult for her otherwise. Her powerchair not only makes this possible but allows Anna to do it on her own. That’s something that Jennie has noticed recently — her daughter is exploring the possibilities of what she can accomplish independently and the sense of pride she feels when accomplishing a task.
Anna’s determination to live her life to the fullest is contagious. Through Jennie sharing her inspiring journey on social media, Anna has amassed a remarkable 359,000 followers on Facebook and 230,000 followers on Instagram. People around the world have been eager to follow Anna’s story and encourage her along the way.
“Anna is the sweetest and most determined child you will ever meet,” Jennie said. “It can be hard to feel different and anything to make her feel more like other kids her age is something we don’t take for granted. She loves to be known for all her wonderful accomplishments and abilities.
And with the help of her power wheelchair, Anna is accomplishing more every day, much to the delight of her mother.
“I would say that the Jazzy Carbon is perfect as a mobility aide. The chair folds very easily like a stroller and it’s just under 40 pounds. It’s a lot more compact and easier to handle than her push chair. Anna can also easily turn it on and change settings and was instantly able to do all of this on her own.”
Keep rolling along, Anna!
