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Hello all. As most of you know (and some of you dont) our seven year old daughter Alexandra was born with a disease called Tuberous Sclerosis Complex. In a nutshell this disease is a genetic defect that affects the brain,eyes, kidneys, heart, lungs, and skin. Ally was born with a countless number of rhabdomyomas (tumors on her heart). Thank God they went away on their own without surgical intervention. Alexandra suffers from a seizure disorder where she seizes numerous times a day. Enduring a sedated MRI/EEG at least once a year, our daughter is a bona fide trooper. She has learning and developmental delays that she will have for the rest of her life. Alexandra is not potty trained, cannot dress herself, cannot follow simple demands from her parents or teachers. Her fine and gross motor skills are that of a 2 or 3 year old. Ally attends Little Village Hagedorn School for Special Needs in Seaford and has made amazing progress in the 4 years she has been a student there. Without a doubt Ally is the sunshine of our lives.
As of today there is no cure for TSC but there is constant ongoing research to find one. Ally and her family will be walking in a walkathon on September 26th in Liverpool NY. We are asking for donations to help us. If you prefer to write a check you can write it to TS Alliance and send it to Rob and Denise Spear c/o Team AllyKate 1769 Andrea Rd. East Meadow NY 11554. Any amount would be greatly appreciated and we thank you in advance. To find out more about our cause please look at the website www.tsalliance.org