Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Austin had his first seizure at 1. Then another a few weeks later. The doctors told us it would go away. At 4 yrs old, Austin stopped progressing developmentally and began having dozens, sometimes hundreds, of grand mal seizures a day. It has been almost 9 years since then. We have been on life support, the ventilator (multiple times), we have seen our son aspirate, suffocate, and have respiratory failure (several times). He has been on dozens of medications, many of which had HORRIBLE side effects. Ranging from anaphylactic shock and organ shutdown to excessive weight gain (30lbs in 30 days...when he was 6) to inability to function. The list is long of miserable side effects, and still he seizes. After years on 5-6 medications, his little body last year almost gave out. So during his stay in PICU they weaned him off the medications down to the 2 he is currently on (Banzel and Onfi). Austin STILL HAS GRAND MAL SEIZURES EVERY DAY. We have lived on one income for years because of the need for one of us to be with Austin. We miss many important events, time with family and friends and very often will have to go to things without Austin and Jason or I. In December, we received the results of the genetic tests that Austin had Dravet Syndrome - the catastrophic form of Epilepsy. There is no cure. We will be having a fundraiser on July 12th at Charlies Sports Bar in Choctaw to raise awareness of Dravet Syndrome & Epilepsy and to raise money for Austin (we are going to travel to Colorado to try cannibinoid oil and to Miami to the Dravet Clinic). I would like to ask for help with this fundraiser. Anyone who would be willing to help, support, volunteer - it would be amazing. Lots of activities - a day of fun for the kiddos, inflatables, LIVE music and more. Also a poker run during the day and a concert, shindig 6-10pm. Looking for silent auction donations, sponsorships etc. Currently Mike Potts, Dana Romée, Wesley Romée, K.k. Harper, and Ashley Jo Pugh are coordinating with us on the event - SO A BIG THANKS to you guys -we cant do this without help. Lots of help. PLEASE and THANK YOU! #gogreenok2014 #goaustingo
Posted on: Sun, 22 Jun 2014 18:03:06 +0000
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