Smithtown, NY - Momstown Gather - Share - Support

We are writing this letter in desperation on behalf of a local Smithtown boy named Robbie Lettieri.  Robbie is a 16 year old boy who has been suffering for six years with a severe and very rare case of Tourette's Syndrome.  We have personally known Robbie for six years since he was 4 or 5 years old and can only describe him as the nicest and most compassionate, loving and loyal son, brother and friend that anyone could ask for.  Robbie is fun to be around and his laugh and smile can light up a room.  All everyone wants is to have "the old Robbie" back. 

 Looking back, Robbie's mother, Debbie, can remember Robbie at age 7 showing slight signs of what could possibly have been the onset of Tourette's Syndrome.  Today, however, there is no question about Robbie's diagnosis.  This indescribable and extremely rare and severe form of Tourette's has now taken over his life entirely.  Robbie can no longer be left alone due to the severity of the dystonic episodes he so frequently encounters.  In addition, there is a real fear that he may seriously injure himself or others due to their life threatening nature.  These episodes can last in excess of an hour per occurrence and there is no way of knowing how, when or where they will take place.  Robbie can no longer enjoy a simple walk around the block with his dog; a swim at the beach; hanging out with his friends; or any of the simplest pleasures in life that we all take for granted.  He has been hospitalized numerous times and has been seen by countless numbers of doctors and specialists, whom all feel that this is the worst case of Tourette's they have ever seen. He has been on numerous medications since being diagnosed - all of which come with a very high price and extremely negative side effects including, extreme depression; physical and mental exhaustion; suicidal tendencies; and personality alterations.  Robbie has experienced all of these side effects on an every-day basis for which he has also been hospitalized.  When your 16 year old child suffers from a disease that can only be described as inhumane, you will do anything and everything in your power to find a course of treatment that allows your child to live the life of a 16 year old boy.  Debbie and Jay are these parents.  They have been battling Tourette's with their son Robbie for what feels like an eternity.  In the process, they have spent every ounce of hope, and invested all of their finances, into finding the treatment what will work for Robbie.

Robbie's parents have now exhausted all of the options available to them and the last possible hope of him having a normal life is to undergo a very radical surgery called "Deep Brain Stimulation" ("DBS") which costs in excess of $200,000.  His team of doctors now concur that this is Robbie's only hope for a future without the debilitating suffering he now endures on a daily basis.

Friends and Family of Robbie's are planning to have a fundraiser on September 16th, from 6:00 - 9:00 p.m., at the Smithtown Landing Country Club.  If you, or someone you know, would be interested in contributing to this cause, please make all donations out to the "Robert Lettieri Fundraiser" and send to the address below.  Thank you in advance for all of your generosity.

Sincerely,

Family and Friends of Robbie 

Please send all donations to:Lynn O'Keefe, 2 Mountain Laurel Lane, Kings Park, NY 11754