Tuesday, June 1, 2010

Alicia's Fundraising Page

Alicia's personal message:
Here we are again. Another year has passed, and my Remy has proven that he is a complete and utter ROCKSTAR! He has over come "catastrophic epilepsy" and radical brain surgery (removal of 40% of his right hemisphere) and is approaching his second anniversary of seizure freedom. The further we get away from the reality of seizures, and the more that Remy continues to "close the gap" developmentally, the more I long for this thing called TSC to just go away. He has over come so much, and gained an incredible amount of skills this year. I was just re-reading my page from last year, and I wrote that Remy had just began crawling a few months earlier. This year....he is walking. Can you imagine, a boy who is missing his right motor cortex, walking? He is so incredibly amazing. I can't begin to explain the pride I feel in the accomplishments this little boy has achieved. I am blessed beyond words to be his mother, and you may not know....but you are so blessed to just know who he is.

While my little man is progressing by leaps and bounds, he still has Tuberous Sclerosis Complex. He is in a special education classroom where he gets the extra help that he needs. He also gets out patient Physical and Occupational Therapies during the week. No matter what we do, it will always be there. We will always have yearly MRI's and EEG's and eye exams, and neurology appointments and one day....maybe more. Eventually, he will more than likely encounter issues (tumors and the likes) with his kidneys and skin. That is the nature of a multi-system disease, it just doesn't know when to quit....right?

While my little boy lives with a life-altering disease, there are people who work VERY hard to find a way to change the lives of those effected by TSC. The Tuberous Sclerosis Alliance is dedicated to finding a cure for this devastating and relentless disease. They just can't do it all on their own. They need money to fund research efforts in the quest for curing my little dude, and many others who are effected by TSC. I am committed to taking part in the Step Forward to Cure TSC walk every year to raise money for TSC research. I can only hope that you can commit something....anything to this cause. A cure for TSC means more to me than you can imagine. It means EVERYTHING. It means that Remy can lead a more "normal" life. It means the possibility for him to have a family of his own with no fear of passing on this ridiculous disease to his children. it means freedom, and you can be a part of it.

Please, whatever you can give....it will make a difference. It will help the TS Alliance in his efforts to find a cure for my baby, and for many many other kiddos out there who are more severely effected. Please check out the alliance's website, and visit my blog at www.reallybrodie.blogspot.com to learn more about this amazing little boy and why he deserves to have this burden lifted from him. Thanks to all of you, we love and appreciate you more than words can say.

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