Damien is an amazing 6-year old boy. He loves sports, family and friends. He has JME (Juvenille Myoclonic Epilepsy), but it hasn't stopped him. Sadly, Damien lost his beautiful sister, Kim, to SUDEP (Sudden Unexplained Death in Epilepsy) in 2008. In addition, his Mother has also been diagnosed with Epilepsy, so they rarely get a break. Damien's family lives in a constant state of exhausting worry and stress.
Akuna is currently in training for Damien and should be finished sometime this Fall (2014). Akuna will be used to alert Damien's parents or teacher when a seizure is occurring, retrieve rescue meds and be with him to offer both comfort and reassurance throughout his seizures and to keep him calm. Akuna will also be another set of eyes allowing Damien to recognize safe boundaries. In addition, Akuna will be trained to press an able phone that calls 911 if needed.
Our goal is to get life-saving measures in line for all who could benefit from them. By raising SUDEP (Sudden Unexpected Death in Epilepsy) awareness, our hope is to get epilepsy research on the radar. Most believe that if you have seizures you can take a pill and be cured. Truth is that only 1/3 of those with seizures are controlled by medication. For many, multiple seizures are an every-day part of their life. 1 in 26 will be diagnosed with epilepsy in their lifetime.