Saturday, August 02, 2008

Dravet Syndrome and seizures affect 4 years old boy's life

If it weren't for the helmet he wears, you wouldn't think JJ Krentz was different from any other four-year old.

His mom, Tiffanie, describes him as rambunctious and high energy, always laughing with a big, bright smile.

But JJ also has Dravet Syndrome, a rare genetic disorder that causes seizures and cognitive delays. Tiffanie says JJ's symptoms first surfaced when he was seven-months old, and suffered a frightening, 45-minuted seizure. They were sent home, hopeful it was a one-time happening. But a little over two months later, he had another seizure and Tiffanie and her husband Kevin noticed his development had slowed down.

It would be another two years before they'd get the diagnosis of Dravet. Meantime, JJ's seizures increased. He'd often have several a day, and he spent a lot of time in the hospital getting tests.
Today, JJ takes four anti-epileptic drugs. He's getting help at Easter Seals Capper Foundation for his developmental delays, but the seizures still happened. Tiffanie and Kevin don't know when the next seizure might hit, and that is cause for concern. Tiffanie says people can fall from a seizure and suffer a brain injury, or they may suffer one in their sleep "and they don't wake up the next morning."

JJ's family is trying to raise $11,000 so they can purchase a dog specially trained to alert them when a seizure is coming on. Tiffanie says they won't be able to stop it from happening, but a warning will allow them to get him to a safe place and make sure his emergency medicines are prepared.

Plus, the dog would be a constant companion, providing an extra level of support so Tiffanie and Kevin can give JJ what any parent wants for their child - the ability to be the best he can be.

"We'll be able to provide him his own sense of independence and the ability to explore the world a bit more than he can now," Tiffanie said.


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