Hello again!!!! Thank you for re-visiting our page. As most of you know Denise and I are taking on the roles of Chairpersons for LONG ISLANDS FIRST EVER "STEP FORWARD FOR A CURE" WALKATHON being held on Saturday September 25th 2010 at Wantagh Park in Wantagh NY. It is a very exciting time for us and we hope with all of our friends and families support we will make this walk bigger and an event to remember.                                                                                                                           

                     ALEXANDRA'S PROGRESS 2009-2010

All of you know Alexandras story and what her everyday life (and ours) is like but we just want to give you an update of our beautiful angel. Although Ally shows a good amount of positive progression in school and behavior at home, she still is suffering from daily seizures. These seizures can be just a stare into space for a minute or two, sometimes a grand mal seizure that takes the life out of her for the better part of an hour or two, or our newest seizure.... THE DROP seizure. These come without warning and strike her at anytime. Whether it be sitting down eating, standing in the shower, walking down the stairs, etc.. They attack her causing her to lose control of everything and cause a momentary loss of consciousness. Unfortunately, because of these drops,  she has wound up in the hospital due to falls down the stairs, or in the bathroom. These seizures are the menace of our everyday life. Never knowing when the next one is coming. She truly SUFFERS everyday. Alexandra is still very delayed, still not potty trained (although Denise and I work on it everyday she just cannot grasp the concept), she still attends Hagedorn Little Village School where she absolutely adores her teachers. She still loves to read magazines and watch her favorite television shows (WordWorld, Sesame Street, Blues Clues). Wherever Ally goes she leaves a positive and pleasant impression. And wherever we go EVERYONE LOVES ALLY.  We still see the same doctors in NYU that are tracking a tumor like growth in her brain and one day she may be a candidate for brain surgery. While we would never want to see Alexandra have surgery of any sort this surgery could change her life in a major way. 

Overall Ally reamains the same beautiful girl she was last year. She is our sunshine and always will be. Our goal is to raise awareness to Tuberous Sclerosis Complex and to those families that suffer everyday because of this disease. We need to raise money so that one day a cure will be found and we can erase this ugly, miserable disease. Funds also go toward research for autism, epilepsy, and cancer - all diseases that touch every one of us in one way or another. So please come join us for our walkathon and recruit as many people as you can to come walk with you. Join our team or create your own. It promises to be a fun filled and rewarding event. Thank you all so much for your past, present, and hopefully future support. We love you all. If you cannot walk and would like to doante that would be greatly appreciated. Any donation can help. If you do not want to donate online you can mail a check payable to TUBEROUS SCLEROSIS ALLIANCE to Rob and Denise Spear ATTN Team AllyKate 1769 Andrea Rd East Meadow NY 11554              

Denise and I just want to thank the following people and organizations for their off line donations and amazing continued support. THE WESTBURY FIRE DEPT HOSE CO#1, WESTBURY FIRE DEPT HOOK AND LADDER CO #1, WESTBURY FIRE DEPT. HOSE CO#2, WESTBURY FIRE DEPT RESCUE SQUAD, DOMINIC AND CAROL PELUSO, MR AND MRS RICK ZAINO, PAT AND MELA CATAPANO, ROB FREEDMAN, Mr. and Mrs. James Reardon, Jeff Goodwin, Mrs. Debbie Fink, Mary Scott, Ian Rogers, Mr. and Mrs. Frank Iadevaia, Joseph Riccardo, Mr. and Mrs. William Fastenau, John Olnowich, The Rice Family, Bill and Sue Cornell, Scott Riekert, Chris Pena, Morton Lemakau, Maureen and Benny Cuda, NorthCoast Subaru, Nancy Masone, Michael Knatz, Al Schraibman, The Officers and Members of the Carle Place Fire Dept, Greystone Abbey, The Delaney Family, Pete Brenner, North Bellmore FD Engine and Rescue Co. # 2, Mr and Mrs Earl Tobie, Rob Florie, Dr. & Mrs. John Zaso, Liz Condon, Tom Shevlin, Stasi Brothers, Josephine Arnold, Mr. George Vacchio, Det. Michelle Clifford, Mr. and Mrs. Steven Gillespie & family.

Thank you for visiting our Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!