Despite a challenging diagnosis, Alana Little’s smile and courage are inspiring, enough so to earn her the title of Little Miss Wheelchair Texas last March at the Crown Plaza in Houston. She was selected by the Ms. Wheelchair Texas Foundation and is using her time with the crown to accomplish some impressive things.
Lana, as she is known by her family, was born with a rare genetic disorder known as ataxia-telangiectasia, or A-T (also referred to as Louis–Bar syndrome), which combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, and immune deficiencies. The disease was worsened due to exposure to drugs and alcohol in utero. She has been raised by her grandmother, with the help of part-time aides.
She has used a wheelchair for part-time mobility since she was twenty-four months old, but moved to full-time wheelchair use last summer to help her cope with extreme fatigue that sends her to bed at 5:30pm each day.
“It attacks the cerebellum, and Lana’s cerebellum has been destroyed by the disease already. If we were to let Lana walk, she would more than likely fall down immediately or wobble like she’s drunk,” her maternal grandmother said.
Another unfortunate problem with an A-T diagnosis is that the disease is very rare. Only 500 children have been diagnosed, which is not enough for pharmaceutical companies to work on finding a cure. Children with A-T are 1,000 times more likely to develop cancer. Few people know of the disease, which is something Alana hopes to change with her time wearing her new crown.
Born into a situation that involved homelessness, mental illness, domestic violence, and substance abuse hasn’t stopped Lana from overcoming the obstacles and coming out ahead. She is an active girl who enjoys Girl Scouts, special-needs cheerleading, shopping, horses, and Justin Bieber.
“Despite what they look like on the outside, they’re regular kids on the inside and have the same feelings and needs that any other child does. More than anything, they just want to be accepted for who they are,” Little said. “Despite the A-T, we look for the fun things in life. She’s very happy.”
Lana and her family have started the “I Can, Just Watch Me” initiative, which they hope will empower a message of ability, rather than disability. Children around the world are being photographed holding a sign with the slogan, and the photos are then shared online.
“Our kids are so often told that they can’t or they won’t…we want to spotlight and highlight how our children are doing things,” Little said. “We’re also going through the community and taking pictures of able-bodied people–men, women, children–saying, ‘You can.'”
Lana is making public appearances at the Texas Children’s Hospital, MD Anderson, and a special needs program with the National Dance Institute as part of her campaign.