Alex Scott was one in a million. Tara Lindsay is, literally, one in two million.
We've all heard the heartwarming story of Alex's Lemonade Stand. How little Alex Scott, diagnosed with cancer and undergoing chemotherapy, sold cold drinks outside her Main Line home to raise money for research into the dreaded disease that would eventually take her life at age eight.
With a little publicity from champion race horse Afleet Alex, those ubiquitous yellow citrus booths sprung up around the country, and raised over $2 million. A lasting tribute to a courageous and generous little girl.
We have our own Alex Scott, with roots in Richland and Quakertown. A little older, and not nearly as well known. No national photo ops, and no Preakness winner named for her. Yet. But Tara Lindsay is dancing again. And smiling. And, yes, crying. And raising money, and public awareness, for Multiple Sclerosis research.
MS is a debilitating, unpredictable neurological disease that affects the central nervous system. While not considered fatal, there is no cure. Virtually all of the 400,000 Americans with MS were diagnosed in adulthood. In fact, symptoms are so rare in children that, since 1980, there have been only 400 cases reported. In the entire country .
At age 16, Tara was a normal teenager, a popular junior at Pennridge High School with her twin brother, Tanner. Tara's passion was dance. She had been taking classes and performing since age two. She had never heard of MS, never thought that she was the one in two million who would be affected. Until last September, when she noticed a burning sensation on her stomach.
Within a few days her whole left side went numb. Doctors first suspected a blood clot, or pinched nerve from her dancing. No one even dreamed of MS in a 16-year old. It just doesn't happen. But when the numbness continued, they ordered an MRI. The scan showed seven lesions on her brain. Multiple Sclerosis. Her family didn't tell her for a week. How do you tell a 16-year old girl that she has one of the rarest diseases in the world?
They researched MS. They looked for specialists. They cried, including Tanner, who is 6'2 and 215 pounds. Tears don't come easily to adolescent almost-men, but Tanner would later tell Tara "I would do anything to have the disease instead of you".
When they informed Tara, she was terrified. Was she going to die? Could she still have children? Was she contagious? Could she still dance? Was her life effectively over at sixteen?
With so few cases of childhood MS, there are few specialists, but they found one at The University of Pennsylvania. Tara began injections three times a week, and steroids to treat the flare-ups. But with the steroids came side effects - most notably weight gain. Her slender body grew by twenty pounds - a traumatic experience for any teenage girl, especially a dancer. By February, her face and both legs were numb. She would miss 35 days of school and be late for 32 more. And she had to stop dancing.
This is the part where the Hollywood story line would read, "Just when you thought things couldn't get any worse...". Incredibly - and happily - they didn't! Tara's form of MS, known as Relapsing-Remitting, finally showed more relapse than remit. She went back to school, and made Distinguished Honor Roll. Lost weight. Cried less often. Resumed her dancing. Even went on a cruise where she performed with her group.
Happy ending? Not yet. She still gets periods of numbness, and feels like a pincushion, needing shots three times a week. Every day is uncertain. But after an ordeal like this, who would blame a teenage girl if she focused on herself, and just got her life back in order?
Not Tara. With no end in sight to her own problems, she set her sights on helping those other one-in-two-million youngsters who face similar painful lives, physically and emotionally. And, like Alex Scott, she looked for a way to raise research dollars, and public consciousness.
On the Internet she found information about the National Multiple Sclerosis Society Team Walk. A friendly competition, where captains organize groups to walk five miles, and personally fundraise in creative ways, like selling symbolic paper sneakers personalized with the donor's name.
Tara's original plan was to keep her team small - relatives and close friends - and raise $1000. Her family started to sell the paper sneakers, which were hung on the wall of their restaurant in Quakertown Farmers Market. But as word of Tara's team - Tarz Starz - spread, more and more people asked to join. Friends. Friends of friends. Strangers sent donations. A local businessman printed team shirts, complete with the logo Tara designed, a dancer reaching for a star.
April 17. The Big Day. 133 people showed up to walk in the Tarz Starz army, including every one of Tanner's teammates on the Pennridge High varsity baseball team, who ran the five miles! They also contributed $500, which they had collected by passing the hat in the school lunchroom.
Tarz Starz raised over $10,000, earning them the award for Largest Fundraising Team at their Lenape Valley site. They were named Rookie Team of the Year by the MS Society, and a Mission Possible Team, the Society's highest fundraising honor, which also qualified them for additional matching funds for local people living with MS.
Tara was named a Platinum Club fundraiser for bringing in over $3000 by herself. Mostly in ones and fives. And plans are already in the works for the 2006 fundraiser, including a Longeberger basket bingo, and, of course, the triumphant return of Tarz Starz.
Tarz Starz. Nice name for a race horse.
For more information about Tarz Starz, email Tara Lindsay at tarzstarz@yahoo.com.