Tomorrow marks opening day of the 2014 Special Olympics USA Games in Princeton, New Jersey and 17-year-old Whitney Lackey of Lebanon, Tennessee is gearing up for competition. Diagnosed at 2 months with tuberous sclerosis complex (TS or TSC), Whitney is participating in her first ever national competition.
A condition that affects about one million people worldwide and 50,000 people in the U.S., TS is characterized by non-cancerous tumors in many different organs. Seizures, developmental delays, intellectual disabilities and autism are also associated with the disorder. Whitney's first seizure was what brought her to Vanderbilt Children's Hospital the day she was eventually diagnosed. Through MRI testing, the doctors discovered lesions on her brain and a black light revealed white spots on her skin—another sign of TS.
The Lackeys took their daughter to a clinic dedicated to tuberous sclerosis at Cincinnati Children's Hospital (though Vanderbilt opened a clinic later in 2007). "Her doctors gave us a very grim diagnosis," says Sharon. "They said she would probably never walk and never talk." Still, Whitney began occupational and physical therapies at just 8 months to help treat her developmental delays. At 21 months, she took her first step, but it was not until age 4 that she walked well. Yet her biggest obstacle was her constant seizures.
After much experimentation with different medications, the doctors managed to get Whitney's seizures under control. "She went from having 50 a day from the age of two months until age 4," says Sharon. "In the last 5 or 6 years she's been seizure-free." Though she still has non-malignant tumors in her brain, left eye, and kidneys, she is in stable health and will be representing Team Tennessee at the Special Olympics in the bocce event. "If you had told me back then that she would be going to the USA Olympics...," Sharon sighed."It's just a miracle." While Whitney is developmentally behind, she is a happy, social teen excited to spend time with her friends at the Olympics.
"She just loves to be outside and loves sports of any kind," said Sharon. In fact, bocce was not Whitney's first sport. She was first on the local Special Olympics swim team and it was her swim coach, Melody Engle, who got Whitney started in bocce. "We've always been her biggest fan and proud of her and it just makes us happy that other people get to see what we see and realize how special she is," said Sharon.
As for her father, Brent, there is no better Father's Day present than to see his daughter succeed and the Lackeys have joined up with Novartis and the TS Alliance to raise awareness about the disease and the need for more education and research. "Other people whose kids are diagnosed with TS should know that it's not all gloom and doom," says Sharon. "You can lead a very happy, positive, fun, active life."
Follow the Lackeys and their Special Olympics experiences on Tumblr.
Click here for more information about the TS Alliance.