Aila
In her own words:
Aila is a vibrant 16 year old girl with a passion for God, art, and life. She strives to make the most of every moment by having faith, seeing beauty, and learning as much as she can. She is a dual enrollment student, working hard to graduate high school with an associate’s degree. She knows she’s going to continue on at a university, but her dreams beyond that are still taking shape. No matter what the future holds, she knows it’ll be full of writing, singing, creation, and love. Her passions are caring for the environment, loving people, traveling, and sharing stories from the stage. Her hobbies include: reading, listening to music, drawing, thrift shopping, and spending time with her loved ones (including a parrot named Tiki!)
Aila was diagnosed with Spinal Muscular Atrophy (SMA) when she was two after her parents realized she wasn’t developing the ability to walk along with her peers. SMA is a rare neuromuscular disease that makes it very hard for the body to communicate with, build, and sustain all muscle tissue. Aila has been a full time wheelchair-user since the age of three, and she receives regular medical care with her team of specialists at Nemours Children’s Hospital in Orlando. She’s had three major spine surgeries due to progressing scoliosis, but her regular treatments include physical therapy and routine lumbar punctures to administer crucial medication. She’s making preparations for another major surgery which she hopes will greatly improve her independence. Aila relies on specific equipment and modifications to make her world more accessible and life easier. She uses a special remote-controlled seat to get in and out of the car, as well as a lift to put her wheelchair in and out of the car--which was generously supplied by Chasin A Dream! She uses respiratory equipment at night, as well as braces to stretch her legs. She has a personally-modified power chair for when she’s on the go at the mall, her college campus, or any of the various explorations she embarks on. She also has a hand-me-down manual chair for when she does what she loves to do most--perform on stage.
Nothing fills Aila’s heart quite like being on stage and getting to embody different people, different lives, and different stories. There’s nothing quite so special to her as being in the warm lights of a stage and hearing someone in the audience laugh or gasp, or seeing someone smile or cry, and knowing that she made them feel something. Her theatre home is currently at Maltz Jupiter Theatre, where she takes classes and performs in student productions.
Despite being limited or disadvantaged by her medical condition, she has big plans for each and every day, and even bigger ones for the future. Aila does what she can to improve her situation and her strength: working out, staying active, and resting when she needs it. But she can still see ways her life can be enhanced. Having a lift to help with in-home transfers would bring ease and independence to her life. Finding home-health aides would allow her schedule to be more up to her choosing. Once she’s old enough, she can’t wait to get an adaptive car so she can take herself anywhere without anyone’s help. The farther she goes, the more obstacles she’ll have to face and the more problems she’ll have to solve, but she has complete confidence she can because she has complete confidence in herself, her family, her friends, and amazing, life-changing folks like you who have a generous spirit and a desire to do good.
