Wednesday, June 8, 2011

Step Forward to Cure TSC

Help out a friend. She is trying to raise money for TSC. And she is walking this weekend to help find a cure ---

Step Forward to Cure TSC - Lansing, MI

It's that time again! Remy has been down quite an amazing path and has overcome more than I ever a dreamed a child of mine wold have to. Tuberous Sclerosis Complex is not the path we chose, but it has shaped who we are as a family and the way that we look at life.

After a shocking diagnosis, unconrollable epilepsy, failed medications, a frantic search for the best of the best in Neurology, RADICAL BRAIN SURGERY, Physical Therapy, Occupational Therapy, Speech Therapy, IFSPs, IEPs, leg braces, MRI's, ERG's, EEG's, renal ultrasounds, eye specialists, and opportunities to meet some of the most amazing kids and there rockstar parents....we are changed.

We love and adore Remy exactly the way tha he is, but it is my hope that one day, there will be no need for families to endure what we have. A cure is possible. It is out there, and we need to find it. Research funding for Tuberous Sclerosis Complex doesn't stop at TSC. Reasearch has resulted in breakthroughs in epilepsy, autism, cancer and many other diseases.

If you have in any way been touched by Remy's story (which you have all heard 1,000 times I am sure :)), than take second to think about the fact that my child is just one person. One perfect, amazing, beautiful child afflicted by a relentless, chronic disease that reaches into every area of his development. There are many many more out there. TSC can happen to any one, not just the children of those already effected. Remy's is thought to be a completely random genetic mutation on his TSC2 gene. That one imperfection in his genetic code has wreaked havoc on his brain and has just started in on his kidneys as well. It's not ok, and we can change it. Help me find a cure for my baby, and for my friends babies too.

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