Life for 10 year old Ayana isn’t really all that different from any other little girl. She loves to jump rope, roller-skate, ride her bike and dance. What makes her special is the extra time and effort it takes for her to do the same activities as her friends. Ayana has cerebral palsy, a disorder that causes uncontrolled reflex movements and muscle tightness. In order for her to participate in all the activities she loves, she spends countless hours in physical therapy as she and Heartspring physical therapist Cheryl Jabara work together to strengthen Ayana’s muscles and increase her range of motion through stretching and other positional activities.
Ayana and her twin sister Ashley were born at 28 weeks and spent the first three months of their premature lives in the hospital. Their mother, Breanne, noticed soon after bringing the girls home that something wasn’t right with Ayana’s legs. “When I would change her diaper I noticed that her legs were really stiff,” said Breanne. Multiple appointments with her pediatrician resulted in no answer. Finally, when she was two years old, Ayana was diagnosed with cerebral palsy. “I was somewhat relieved to finally have an answer. I thought I was out of my mind. I was scared,” said Breanne. “Having a diagnosis was a starting point.”
Soon after being diagnosed, Ayana began physical therapy through another program in Wichita. Breanne was referred to Heartspring Pediatric Services for continuing therapy in 2002. Since that time, Ayana has worked with Heartspring physical therapists as she continues to make strides in her therapy. “Ayana has made great progress with the development of her gross motor skills, and continues to make progress,” said Jabara.
In 2004 Ayana participated in a pilot study with Heartspring physical therapist Denise Begnoche that investigated treatment outcomes during an intensive physical therapy session for four weeks. During this study she received three to four therapy sessions, each session lasting two hours. The focus of the study was on traditional treatment methods. Begnoche’s study with Ayana is scheduled to be published in an upcoming issue of Pediatric Physical Therapy Journal.
Ayana plays a large role in deciding what activities to do during her hour long therapy sessions each Monday. “Ayana works very hard during her therapy sessions,” said Jabara. “She offers input on activities she would like to do or work on, as well as gives me input on goals she would like to work on for the next few months.”
One of Ayana’s big goals was learning how to ride a bike, and thanks to the Lose the Training Wheels program, she accomplished her goal last summer. Now she says she’s focused on stopping her bike without crashing. Breanne never thought she’d see her daughter ride a bicycle on her own. “I was in tears when I saw her ride,” she said.
Dreams of becoming an actress, singer and dancer keep Ayana motivated. “I keep trying because I want to do it (improve walking and balance),” said Ayana. “I’m going to have to work hard to be a dancer and singer.”
Ayana’s personality shines through when talking about the things she loves – her friends, dancing, even camping. Never at a loss for words, Ayana passes the time in therapy by sharing what she’s doing in school and at home with Jabara. She and her sister Ashley have been working hard on a dance they practice at home and perform in front of the fireplace. Along with dancing they also play Marco Polo and make up songs. “They look out for each other,” said Breanne of the girls. “For Ashley, having a sister like Ayana has made her grow up a bit quicker with more responsibilities than other children.”
Cerebral palsy typically isn’t a topic of conversation at home according to Breanne. “It’s part of our life, it’s what we live everyday,” she said.
Breanne’s commitment to her daughter’s progress is evident. Each week she discusses Ayana’s therapy with Jabara and helps keep Ayana focused at home as well. “Heartspring has kept me in the loop with new trends and therapies,” said Breanne. She is thankful to have an organization like Heartspring in Wichita. “It’s awesome – there’s no place I’ve found that has the therapists and equipment – that places so much focus on the child to improve their quality of life,” she said. “She wouldn’t be as far along as she is today without Heartspring. Her mobility and confidence has improved and if she has the confidence to do something, she’ll keep trying.”
Like many Heartspring parents, Breanne gets help from the Financial Assistance Fund. “I didn’t realize that insurance would stop after 20 visits. It’s unfair,” said Breanne. “I thought how can she improve without additional therapy?” After calling Heartspring, she was assured that there was a way for Ayana to continue therapy. A thankful Breanne said she admires those who contribute to the fund. “I felt hopeless when I got that first bill.”
Ayana’s therapy program can be hard work and tests her strength of spirit and motivation. Despite the frustration that at times comes with working on her goals, one thing is ever present – Ayana’s smile.