Mike and I are taking a "Step Forward" again this year in my niece Ally's honor.  But we are proud to say that my sister Denise and her husband Rob (Ally's parents) have put together the first Long Island TSC walk.  The walk will take place on September 25th at Wantagh Park.  We invite anyone who can to "Step Foward" with us, and if you can make a donation towards finding a cure it would be very appreciated.  Every penny counts, and research for TSC also helps research for eplilepsy, autism and children's cancers.

For those of you who are not familiar with what TSC is let me give you some background information.  Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC).  The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation, seizures and autism. However, there are also many people with TSC living independent, healthy lives.

I wish I could tell you that Ally is one of these people that is so mildly affected but unfortunately Ally suffers everyday.  As part of this terrible disease Ally was diagnosed heart healthy for the first time last year at the age 7.  But Ally still suffers from seizures everyday.  She suffers from, stare seizures (where it appears she is just staring into space for a minute or two), grand mal seizures, and now even drop seizures.  These seizures come with no warning, and take so much out of Ally.  Ally has even been to the hospital due injuries caused by drop seizures. 

Ally has some great doctors that are currently continuing to monitor a tumor like spot on her brain.  We pray everyday that this spot does not grow or begin to affect her anymore.

Ally is developmentally delayed but we are happy to say we see progression everyday.  Ally turns 8 on April 7, 2010 and she is still not potty trained.  This is of no fault to her wonderful parents, but this is just an example of the how Ally just can not grasp concepts like others.

Ally has a tough deal of cards but she is such a fighter and angel.  Everyday she makes us smile and we are so blessed to have her in our lives.  She is an angel on Earth.  She truly is a beam of sunshine that touches the hearts of everyone she meets.  We would also like to take a moment to tell Denise and Rob how truly amazing the two of you are to keep your heads held high everyday and not just sit back but stand up and fight.  Ally is lucky to have you two as parents.

We have a great opportunity to raise awareness and money tpwards a cure with the hope that one day I can tell that Ally DOES live and independent healthy life.  Please pass this to anyone you know that would be interested in helping a great cause!

We ask if anyone would like to come out and help us "Step Forward" to please register for the walk (you can do that right from the link on this page).  You can join on Team AllyKate or make your own team.  All you support and love is appreciated.  Remember every little bit helps.

Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. If you do not feel comfortable donating online you can mail a check payable to Tuberous sclerosis complex to Kathleen Conlon or Michael Catapano at 19 Fifth Ave. Westbury, NY 11590 . Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!