If you haven't heard of tuberous sclerosis, you can read about it here:http://en.wikipedia.org/wiki/Tuberous_sclerosis This disease is very near and dear to my heart, all because of a beautiful little boy named Remy.
Remy is 9 months old. Remy has tuberous sclerosis. Remy is the son of one of my very best friend's, Alicia. At 3 months of age, Remy was diagnosed with this terrible disease. He and his parents have spent many a night in the children's hospital trying to get answers and to get his seizures under control that are caused by the tumors in Remy's brain. They have traveled to Canada to get seizure medication to try and help their little boy because it was not available in the United States.
A week ago today Remy underwent brain surgery where the surgeon's removed 40% of the right hemisphere of his brain. This is where the tumors were that were causing the seizures that were causing Remy to be developmentally delayed. The surgeon's told Alicia and Matt to expect major left sided weakness and different seizures from the trauma to the brain. Remy has been seizure free since the surgery. Right after surgery he was kicking his left leg and waving his left arm. Isn't it amazing? God is so good.
Alicia is taking part in a Tuberous Sclerosis walk on Saturday. She is raising money for the event so that we can hopefully find a cure for this disease. Please, if you find it in your heart, donate any little bit that you can and support Alicia and Remy! You can read about Remy and see some pictures of his pretty little face...
https://ecommunity.tsalliance.org/NETCOMMUNITY/SSLPage.aspx?pid=579&srcid=581&frsid=1529
We love you Matt, Alicia, Brody, Matai and Remy!
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1 comment:
Thank you friend.
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