Our Little Superhero Xavier

Four year old Xavier passed away today after suffering several medical disorders, stemming from SCN1A genetic mutation, which caused Myoclonic severe epilepsy (Dravet Syndrome). Dravet Syndrome effects 1 in 15,700 individuals and causes several co-morbidities, such as; prolonged and frequent seizures, behavioral and developmental disorders, movement and balance issues, orthopedic conditions, delayed speech, growth issues, sleeping issues, chronic infections, and dysautonomia. There is no cure, and a 15-20% mortality rate due to sudden unexpected death and epilepsy, prolonged seizures and seizure related accidents, such as drowning and infections. He was 4 months old when first diagnosed and 6 months old when he had his first seizure. Xavier qualified for "Make a Wish," but did not get the chance. Xavier was not alone in his medical disorders, he has two sisters that also have suffered from the genetic mutation, one who has survived him and one he joined in heaven. Sister, Neissa, has suffered several seizures throughout her life and has significant brain damage, she is now going on 16 years of age. Sister, Letty, died in 2011, at almost 2 years old, from the same medical disorder. His mother Jesse, has not worked for going on two years due to his unstable condition, she would have to leave work frequently to take Xavier to the ER or meet the ambulance there, it is also extremely difficult to find/keep daycare for a child that has frequent seizures. She is recently a single mother and needs all the help she can get, as soon as possible, to help pay for funeral and added expenses. We appreciate all the help we can get her in this difficult time.

Xavier is giving the ultimate gift by donating his organs! He is our superhero!