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Alex was born on our seventh wedding anniversary, Oct 14, 2002. He was a healthy and beautiful 9lb 14oz baby boy who was welcomed into our family by us and his older sister Jennifer.
For the first three years of his life, Alex was a perfectly normal, healthy child. That all changed abruptly on July 17, 2006. As we were standing in line at a store, Alex went completely limp and crashed to the floor. Unbeknownst to us, he was having his first seizure.
After several agonizing visits to a variety of neurology specialists, we were told that Alex has a rare form of Epilepsy called Myoclonic Astatic Epilepsy (MAE) , also known as “Doose Syndrome.” Alex has spent countless days and weeks in the hospital as doctors attempted to regulate his medication. Each trip began with such hope, but unfortunately resulted in little change to Alex’s condition. For the past three years, Alex has been treated with 10 different seizure related medications. The medications have helped but have not controlled Alex's Seizures completely.
He was also on a strict medical diet called the Ketogenic Diet, which allowed him to eat only high fat and high protein foods, of which everything had to be weighed precisely on a scale. Cookies, bread, cereal, juice and even milk were NOT ALLOWED while Alex was on the diet.
Alex had frequent drop attacks (10-30 a day) from the time he was diagnosed through being on the Ketogenic Diet. After we weaned Alex off the diet, his drop attack frequency was reduced but then he developed “tonic-clonic” seizures at night while sleeping.
Because of the number of seizures he experiences in one day and their threat to his safety, Alex’s day is limited to certain activities. He is unable to do simple things such as ride a bike, play at the playground, go swimming or even take a bubble bath. All of these normal activities could result in him sustaining a serious injury should he fall. He has experienced many bodily injuries due to his falls and must wear a helmet during most activities. As a result of this, Alex needs 24 hour supervision and protection.
In February 2008, we started fundraising for a special service dog (a seizure alert dog) ;from an organization called "4 Paws for Ability" (
Through donations made from family, friends our local community and word of mouth, we were able to complete fundraising and went to pick up our service dog in October 2008. The service dog placed with us "Honor" has made a huge impact in Alex's quality of life.
Since we were so fortunate to have so much support we want to give back to the Epilepsy Foundation in any way we can. Please consider donating to the Epilepsy Foundation to help further the search for a cure.
Thank you
Alex's Parents
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