• This volunteer organization was founded by impacted parents with the purpose of raising public awareness, expediting research to find a cure and better treatments and providing support to affected individuals and families around the globe.  We were established in Williamsburg,  Virginia on September 8, 2016.   We are a non-profit organization pursuant to Internal Revenue Code Section 501 (c) (3),  a public charity in the United States. 

• Time is of the essence if we are going to save our children's development!  Please donate now to give our kids a chance and spread the word in your community!

What does it mean to have ESES?

• Joshua was a typically developing five year old when he slowly began losing developmental milestones,  started misbehaving in school,  had difficulties learning and  developed a severe stutter such that it made it hard for him to talk.  His parents took him to Boston Children's Hospital for a second opinion where they learned that Joshua was having near continuous subclinical seizure activity during sleep i.e. seizures that are not visible to the naked eye. 
• This rare EEG pattern  is known as Electrical Status Epilepticus During Sleep (ESES).  Children with ESES appear to be sleeping peacefully, but they suffer from subclinical seizures while they sleep.  If left untreated, the child may regress cognitively and demonstrate autism-like symptoms. In severe cases, the child may lose the ability to both walk and talk.  Rarely, Sudden Unexpected Death in Epilepsy (SUDEP) may occur.