Grayson's Journey & how you can help

Hello, my name is Melinda Elmadjian and I am the proud paternal grandmother of Grayson. He is such a sweet boy who has the most infectious laugh. Grayson loves being the center of attention, enjoys watching a variety of Disney movies and above all is a fighter.

While he is now almost 3 1/2 years old, when Grayson had his first seizure, he was 4 1/2 months old. It was about a minute long and he was rushed to the hospital by ambulance. Another followed within a couple of weeks and then again so he was prescribed his first anti-seizure medication. For his parents, Kyle & Susan, this was a very challenging and confusing time with many unknowns, hospital stays and tests for their very young son.

Over time, genetic testing provided some answers as they learned he has a genetically mutated form of epilepsy and is currently believed to have Dravet Syndrome. This rare form of epilepsy causes prolonged seizures and is very difficult to treat. Grayson has been hospitalized twice due to prolonged seizures (status epilepticus), having to be sedated and intubated while doctors work to stop the seizures. These prolonged seizures mainly occur when he has something viral or bacterial and unfortunately, the episode can be the first sign of illness.

Kyle & Susan are incredible and have been advocating for Grayson every step during very challenging times. Their love and dedication to always do what's best for their son continues to amaze us all.

Grayson is currently hospitalized, sedated and intubated because twice today, he's had status epileticus. Doctors are still trying to determine what type of infection he is trying to fight off as he's also had a fever that's been tough to manage.

Over the past few years, there have been several medical bills on top of his monthly prescription costs. Susan and Kyle are hard workers and have never asked for anything to help pay out-of-pocket expenses. Their world evolves around Grayson so it can also be hard for them to make any type of plans and then follow through if Grayson needs extra care.

While monetary help is appreciated, this is also to provide information regarding this rare form of epilepsy and what Grayson and his parents are working through every day.