Utawna Leap often recites the words of Mahatma Ghandi. “You must be the change you wish to see in the world.” Her daughter, Lianna Bryant, has cerebral palsy. By becoming active in the Butler County Board of Mental Retardation and Developmental Disabilities, visiting college classes with Lianna, joining the Family Advisory Council at Children’s Hospital Medical Center, and helping to improve special education in Butler County, Utawna is out to make some big changes.
Lianna Bryant, like most five-year-old children, has been the center of her mother’s life for five years. Lianna was born with quadriplegic mixed-type cerebral palsy caused by a brain injury at delivery. “She’s why my life has changed, and for the better, in every way,” her mother, Utawna Leap of Middletown, said. Utawna has gone from being married to being single, from being independent to living with her parents, and from studying Botany and selling real estate to being an intense activist for children with disabilities in Butler County.
When they are not in therapy, speaking to college students or attending meetings, Utawna and Lianna spend their time on the open land at Utawna’s parents home. “Right now, it is my job to take care of my daughter in every way, shape, and form; that is why I have become involved with everything I can possibly find.”
Lianna’s arms and legs are almost constantly flexed resulting in limited movement, but her upper body, including her neck, are weak and flimsy making it hard for her to sit up straight and support her head. She also has little control over the muscles in her mouth making it hard to chew, swallow and speak. She receives therapy several days a week. “She started physical therapy at Abilities First at eight months… it is like my second home.”
Lianna requires assistance with bathing, using the bathroom and dressing. Utawna uses these situations to further Lianna’s communication skills by asking her if she needs to use the restroom, if it is time for a bath, what she wants to wear, and even how many ponytails she would like.
Lianna’s muscles must be loosened up often. Massaging and exercising them can increase the range of motion. Lianna and Utawna have become close with the therapists. “They are my family,” Utawna said. “They are therapists for me, too.”
Walter Leap, Lianna’s grandfather, and her grandmother Faye Leap took Utawna in after she separated from her husband. “If it had not of been for my parents’ constant support since the day she was born, I think I would be in a padded room,” Utawna said. “We each have individual roles to where I actually get to go to the bathroom by myself, I never had that luxury before.”
Medical equipment is a huge expensive for Utawna. “Anything labeled therapy, the price goes sky high, and insurance does not always want to pay for it.” Utawna said. “You have to learn to fight the system, and fight for everything that you can get.” Lianna’s powered-wheelchair cost $42,000.
Lianna cannot speak, but communicates with her eyes. She can tell time, so when her therapy sessions are ending, she will look back and forth between her mother and the clock. “She lets me know when it is time to leave,” Utawna said. Lianna also has special eye motions. If something is big, she looks up as far as she can. If Utawna is being funny, she will show her “crazy eyes” by crossing them.
Many people diagnosed with cerebral palsy can lead fully functional lives. The brain damage is isolated, so often the intelligence of person is not affected. “We believe (her therapists and I, not just her mommy being positive) that she will talk and have functional speech.” Utawna said. “She’s a bright little kid just stuck in a body that doesn’t want to work just right.”