Dealing with Dravet Syndrome

August 21, 2011 (CHICAGO)

In situations where the disability is either misdiagnosed or relatively unknown, however, it can turn a family's world upside-down.

Typical activities that young children enjoy doing are more challenging for the Gryga family because one of their children has a condition known as Dravet Syndrome.

Trey Gryga is 6 years old. He has to be watched 24/7 because of his seizures. His mom Mollie said it started when he was 4 months old.

"iIt was febrile,' is what they told us and that it would probably never happen again. Little did we know that it would happen again and again and again, and we would start seeing different types of seizures," Mollie Gryga said.

Trey was diagnosed with Dravet Syndrome when he was 18 months old.

"Some of the things that trigger his seizures are heat, temperature changes, being too hot or too cold being over excited, so we have a lot of precautions we have to take when we go anywhere as a family," Mollie said.

He also has cognitive issues.

"His biggest delay is speech and what happens with a lot of these kids is with the seizure they start regressing almost to the point of mental retardation," Mollie said.

His balance is off a little, too.

"He's not really aware of his place in space so he doesn't really have the reflexes," Mollie said. "So, he falls a lot."

Although Trey is happy and active, what he can do depends on weather and seizures. His dad Ron tries to integrate "normal" activities.

"Trey does play baseball. He plays in a special needs baseball league in Joliet call the Miracle League, and while he doesn't ever put on his mitt or wear his hat, he does wear the uniform. He does hit the ball off the tee and we do get him to run around the bases even though Trey has some limits," Ron said.

Another challenge for the Grygas is that they have to keep the house locked.

"He has an affinity to water so we keep all the doors in the house locked especially the bathroom and this door out to the pool is locked with a key. He has escaped from the house a few times so we fenced in the yard because I couldn't take him outside. He would run away," Mollie said.

Since Dravet Syndrome is not well known, the Gryga family's goal is to increase awareness.

"Like even our own family members don't really understand what our day-to-day life is and what we have to go through to keep Trey safe and alive on a daily basis," Ron said.

Also, there's a need for more research about this disability.

"The prognosis isn't great for these kids. A lot of them don't make it to adulthood. A lot of them have sudden unexplained death and epilepsy, and they just pass in their sleep, but hopefully with more research we'll be able to find a cure," Mollie said.

Trey does take medicines which helps control his seizures. Click here to donate to the Trey Gryga Research Fund.

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