Addie's Answer to MAE

We are raising money to support The Doose Syndrome Epilepsy Alliance, a foundation working to fund the research for a CURE to a form of epilepsy also known as Myotonic-Atonic Epilepsy (MAE). Our oldest daughter, Addie, was diagnosed with this disorder, and there is currently no definitive cure. Our goal is to find one! Read more about Addie's story, MAE and The Doose Syndrome Epilepsy Alliance below. We appreciate any donations more than you know. Thank you for helping save our baby girl and many other children.

Addie's Story: Addie was a typically developing, seizure free child until just after her third birthday this year. Two months after turning three, Addie had her first grand mal seizure. After a rush in an ambulance to the ER, lab work, a visit to a neurologist, and multiple tests (MRI, EEG, and EKG) were all clear; we were hopeful it was just a one-time seizure. Unfortunately, about a month and a half later, Addie began having subsequent grand mal seizures and was given a pediatric epilepsy diagnosis of Myoclonic-Atonic Epilepsy or Doose Syndrome. At this time, she started her first seizure medication. Her grand mal seizures then subsided, but she began having myoclonic (brief, jerking spasms of the body), atonic (parts or all of the body suddenly become limp) and absence (staring spells) seizures. A second medication was started, and then a third, and now a fourth. We spent a week in the hospital due to uncontrolled seizures and are now considering the Keto diet to manage her seizures. Addie’s seizures are considered intractable, meaning that they are extremely difficult to control with medication alone and other measures (Keto diet, surgeries, etc) are often needed.

More information about Doose Syndrome Epilepsy Alliance: Doose Syndrome Epilepsy Alliance (DSEA) was informally established in 2002 by parents of children diagnosed with Myoclonic Atonic Epilepsy (MAE), commonly referred to as Doose syndrome. These pioneering parents had corresponded through a Yahoo group. Although it started with just 5 members seeking community we formally established Doose Syndrome Epilepsy Alliance (DSEA) as a 501c3 not for profit (For Impact) organization in October of 2014 after having a fiscal sponsorship agreement for the previous 3 years. Our numbers have now swelled to over 1500 from all around the world.

Currently, the Doose diagnosis has been accepted by leading hospitals worldwide. However, many hospitals and doctors remain unfamiliar with it and do not appropriately or effectively diagnose and treat children with Doose syndrome. We want to change that. Every child and their family deserves to be supported. We are joining forces to create change.

More information about Myotonic Atonic Epilepsy or Doose Syndrome : Doose syndrome is a rare form of childhood epilepsy that usually begins between the ages of 1 and 5. The median age at onset is around 3 years old. Children are usually developing normally before onset. Currently, the cause of Doose syndrome is still undetermined though genetic links are suspected. Outcomes for children with the condition vary. For some children, seizure freedom does occur either through treatment or spontaneous remission. For others, seizures may persist into adolescence and beyond. While many things are beyond our control, the approach we recommend is one that seeks to maximize each child’s potential.

Please reach out with any questions. We appreciate you so much. Thank you for all of your help.