CSWS epilepsy, also referred to as ESES, is an uncommon epilepsy syndrome in which children lose a wide range of developmental abilities, including language, motor skills, memory, and visuospatial skills. In severe cases, the child may lose the ability to both walk and talk. Rarely, Sudden Unexpected Death in Epilepsy (SUDEP) may occur. This syndrome occurs in school-aged children and in many children there is no known cause of epilepsy. When children just lose language skills it is referred to as Landau Kleffner Syndrome. Early identification and treatment is critical to preserve their neuropsychological development.
We’re organizing Sing & Play 4 Kids to raise public awareness and research funds to help the kind doctors and researchers at Boston Children’s Hospital discover causes, cures, and treatments for ESES. Every dollar raised supports ESES research and puts us one step closer to a cure.
How can you help?
We would love your support. Attend an event, make a donation, or help us spread the word by taking the Sing & Play 4 Kids Challenge benefiting Boston Children's Hospital ESES Research! To donate, take the challenge, join our fundraising team or learn more click here now!
(Sing & Play 4 Kids is a third party fundraiser benefiting Boston Children's Hospital.)
Meet Josh, the Boy Who inspired sing & play 4 kids
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.
Joshua was fortunate, in that he responded well to the early intervention and treatment he received at Boston Children's Hospital and the ESES pattern disappeared. Soon thereafter, his parents saw significant improvement in Joshua’s speech, behavior, and the autism-like symptoms resolved. He learned to read, climb and ride a bike for the first time.
He was doing so well that at only 6 years of age, Joshua with the help of his Mother launched a door to door awareness campaign in his community to raise awareness of ESES and advocate for kids like him suffering from this potentially devastating and difficult to detect epilepsy.
Two goals of his campaign are to raise public awareness and promote early identification and treatment. We believe that global collaboration is key to unlocking the mystery of this disease!
Inspired by Joshua’s love of music from a very early age and the kind talented doctors at Boston Children's Hospital, we launched the Sing & Play 4 Kids Challenge benefiting Boston Children’s Hospital in December 2016.
The goals of this challenge are to raise public awareness and research funds to help the dedicated doctors and researchers at Boston Children’s Hospital find a cure and better treatments for children living with epilepsies associated with ESES e.g. CSWS Epilepsy and Landau-Kleffner Syndrome.
Through this challenge we also hope to find passionate advocates, as well as dedicated individuals and families to help deliver this very important and urgent message to parents around the globe! We will leave no stone left unturned to find a cure for our kids and we would love for you join us!
3) Share your photo/video on social media using #SingandPlay4Kids and #ESESResearch. Tag 3 (or more!) friends to accept the challenge, post your own photo/video, donate, and tag others to join within 24 hours. That's it!
The information provided on this page is for general information purposes only. We are not medical professionals and cannot provide you with any medical advice. Please direct all medical related questions to your physician. If you think you may have a medical emergency, call your doctor or 911 immediately.