If you have ever had the pleasure of meeting Aarius you know he has one of the brightest souls. He is an absolute joy and lights up even the darkness days. He is constantly with a smile on his face even when he driving me crazy with his always full reserve of energy. He’s my wild, happy, silly boy! He is all this and so much more despite his constant battle with Dravet. Aarius started having seizures at 4 months old and after two months of things progressively getting worse and multiple admissions to Boston children hospital he was finally given the diagnosis of Dravet Syndrome. Dravet syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is an intractable developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. Dravet syndrome is a rare genetic disease, affecting an estimated 1:15,700. We were grateful to finally know a cause but also heartbroken learning this was not something we could fix and my boy would now have to fight this battle for the rest of his life. These past four years have been full of ups and downs. From therapies, dr visits, hospital admissions and endless ER visits to birthday parties, milestone celebrations, starting preschool and continuously throwing some ball around the house one things has remained constant; Aarius’ strength and resilience. I am always an awe of this boy. Every time Dravet tries to knock him down he gets right back up. 

All monies fundraised will go directly to the Dravet foundation who work to not only bring awareness to Dravet but also aides in research for new treatments. Current treatments are not very effective! Most with Dravet still suffer daily from seizures and other complications related to Dravet. Aarius like most others have failed multiple meds and without newer treatments I’m really not sure what happens next. Our hope is that soon in the future there will be better, more effective treatments and hopefully one day a cure. Until than we will continue to bring awarness and join Aarius in his fight against Dravet!

The Dravet foundation also provides assistance to families and provided a safe place for support that I personally have benefited from. This community has helped me tremendously when looking for someone to vent or advice from people who are also in our shoes. I will always fight for Aarius and everyone else who has Dravet.

For anyone that wants to walk with us we will be meeting at Fort Tabor, New Bedford on November 16th. We will be there for noon and walk will start at 12:30.  

 **Please try to wear purple or include it in your attire in Support of epilepsy/Dravet awareness.

For more information about Dravet and the foundation, click the link below. Also check out the video below from the balancing act who did a segment on dravet syndrome.

https://dravetfoundation.org/what-is-dravet-syndrome/

https://m.youtube.com/watch?v=G-bROGGPJpI&t=32s&pp=2AEgkAIB