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Fundraising Makes Experimental Procedure Possible for Local Teen

Local moms band together to help local 16-year-old boy with rare disease.

A group of local moms have rallied together to help a Smithtown boy with a severe and rare case of Tourette's Syndrome lead a normal life.

Robbie Lettieri is 16 years old and has been suffering from a case of Tourette's for the past six years. His uncontrollable and recurrent physical ticks, which can often last longer than an hour, mean he can no longer be left alone.

After many hospital visits, doctor evaluations and high priced medications, his parents Debbie and Jay learned the only possible hope that Robbie has to live a normal life is to undergo an experimental procedure called Deep Brain Stimulation (DBS).

DBS is classified as experimental so insurance does not cover the costs, which will exceed $200,000.

The group of moms, led by Lynn O'Keefe, have known Robbie since he was five years old.

"We can only describe him as the nicest and most compassionate loving and loyal son, brother and friend that anyone can ask for," they state on their website, Friends of Robbie Lettieri.

Robbie's sister, Kristin, has a very close relationship with her brother. She has taken an active role in the group fundraising efforts, and hopes that it will help her brother get past his Tourette's.

"Next to my parents, my brother is the strongest person that I know," she said. "He fights a battle each and every day, which many of us don't come close to enduring, throughout a lifetime. The only chance Robbie has at getting his old life back, and my family getting the old Robbie back, is this surgery."

To help raise money to pay for Robbie's procedure, O'Keefe organized meetings once a week, where about 15 women came together to plan events. The first fundraiser attracted more than 300 people to Smithtown Landing Country Club on September 16. 65 gift baskets were raffled off, as well as an Apple iPad and a 42'' Flat Screen TV. The group said the fundraiser was very successful, but did not wish to reveal the amount of money raised.

A Hope for Robbie Facebook page has also helped in the fundraising efforts. The page has raised over $500 for the surgery, with more money trickling in daily. Robbie has found this page to be a good outlet to thank his supportive base—the page has attracted almost 1,100 people in just over a month's time. Robbie has posted his thanks in writing as well as videos.

This Sunday, there will be a second and final fundraiser at Popei's Clam Bar, at their annual Shark Fest. Robbie would like to attend but is hesitant to because his ticks tend to worsen when around big crowds.

Last week, Robbie alerted all of his supporters through his Facebook page that a date has been set for his procedure: Nov. 15. The Lettieri's were hoping for an October date.

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