I Love the Wind In My Face
Lawrenceville, Georgia (Senate District 9)
On a rainy Sunday morning in Lawrenceville, Kyleigh Kramlich is relaxing at her family home. “I was watching some TV,” she spells out one word at a time using an iPad-like device attached to the front of her wheelchair. After a robotic voice reads each word aloud, she asks it to read the entire sentence back as a complete thought. It takes about 30 seconds. Kyleigh, 15, has cerebral palsy, likely from a uterine rupture that her mother Christine experienced during delivery. Both of them nearly died. “It was a really treacherous situation for both of us,” Christine said.
Because she taught kids with developmental disabilities, Christine suspected some issues early on after bringing Kyleigh home. When Kyleigh was three months old, she had involuntary movement in her arms and legs as well as low muscle tone. At two years old, she was still not sitting up. Despite this, Christine had to plead with Kyleigh’s doctors to get a diagnosis that would help them receive services. “It was because of the nature of the injury,” she said. “No one wanted to point fingers at another practitioner.” Kyleigh currently uses the Katie Beckett waiver and the Community Care Services Program (CCSP) to help her family receive the support they all need, but these funding sources are not enough. “It’s really hard to find support people … (who) can manage physical needs as well as emotional and personal needs,” Christine said. (Story continues below after slideshow.)
Kyleigh is on waitlists for both the COMP and NOW waivers and has been since she was five years old. “Unless you call and follow up, you don’t ever hear anything,” Christine said. “It’s incumbent on me as the parent to keep calling and leaving messages on voicemails that are full.” Still, Kyleigh has ambitions. She’d like to go to college, and the Kramlich family hopes that Kyleigh will live independently one day.
“My life is hard because people don’t realize I am a person too,” Kyleigh said. “The thing that’s most important to me is being heard.” Christine tells Kyleigh communication is important, so she can one day advocate for herself. For their community, Christine says including people with disabilities is critical. “Being in [the real world] community, with her peers — that has been a primary goal for us and continues to be,” she said.
Kyleigh just transferred to Hebrom Christian Academy, which recently integrated students with disabilities into the same classes as other students. Kyleigh also connects with other people through a Facebook group called “I Run 4.” Here, runners from all over the world “adopt” group members who can’t run themselves. Runners run for them in public events and trainings. A couple in Indiana started running for Kyleigh. They send her medals and write her letters, telling her she is the reason they enjoy their running practices. Now, Kyleigh has decided she wants to have her own running practice. She has a running wheelchair where someone runs from behind and pushes her. She went to a camp through the Kyle Pease Foundation where she deepened her understanding and appreciation of running. “Now, they run for each other,” Christine says. Kyleigh is currently trying to qualify for the Peachtree Road Race.”
“I don’t care if we win or not,” Kyleigh said. “I love the wind in my face.”
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey