It is with great honor that I announce that our Chicago Faces of Epilepsy are Colin and Cailean Walker! They will be representing the Epilepsy Warriors Foundation from April 2013 through April 2014 and will be honored at our Chicago Gala Dinner on April 20th. We love you both and are so happy and thrilled to have you both represent us.

Colin is a 15 yr old boy and Cailean is a 9 yr old girl living with Dravet Syndrome, a rare seizure disorder. Also known as Severe Myoclonic Epilepsy of Infancy (SMEI) is a severe form of epilepsy.  It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5.  Later, other types of seizures typically arise, including myoclonus (involuntary muscle spasms).  Status epilepticus – a state of continuous seizure requiring emergency medical care – also may occur.  Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.

In 30 to 80 percent of cases, Dravet syndrome is caused by defects in a gene required for the proper function of brain cells.  Borderline SMEI (SMEB) and another type of infant-onset epilepsy called generalized epilepsy with febrile seizures plus (GEFS+) are caused by defects in the same gene.  In GEFS+, febrile seizures may persist beyond age 5

Candace Carney their Mom says I am a single mom of 3 great kids. Epilepsy has taught us to live every day and love every moment.  I survive on hope and faith and laughter. Parenting kids with special needs has taught me that every single day is precious. She says Colin had his first seizure at 5.5 months and Cailean had her first seizure at 7 months of age. It took years to finally get a correct diagnosis and finally be on the right road of treatment. Today they are doing well participating in school and on a special needs competition cheerleading squad.  They love to swim and ride the rides at Great America. Colin averages at least 1 seizure, usually a cluster of seizures, every 7-10 days. Cailean is much more sporadic. They each take more than 360 pills a month to try to control their seizures. There is no cure. We live each and every day to its fullest and on faith, hope and love.