22 04 2008

Family struggling with dystonia

By Talal Elmasry

Special to The Sun

Gainesville Sun


Rick and Michelle Staab of Alachua were constantly looking for signs.

They kept hoping their 50-50 chance would go their way.

But it didn’t.

The dystonia that has crippled their son Tyler has also shown up in their 7-year-old daughter, Samantha.

“It’s almost like we were seeing things. We’re always looking for (signs),” Rick said. “About a month ago, she started limping in her left leg.”

Samantha has since been diagnosed with the same gene form of dystonia as her 9-year-old brother, DYT-1 Dystonia.

There is no cure for dystonia, which affects about 250,000 Americans.

As a neurological movement disorder, the brain sends wayward signals to muscles, causing them to contract involuntarily in often painful positions.

The disorder may not be fatal, but it can progressively wear away its victims’ quality of life.

The earlier in life it is diagnosed, the more rapidly it progresses.

At this point, it has forced Tyler into a wheelchair, while making his speech difficult to understand.

“It’s tough to watch your children completely normal one day, and then see them have things taken away from them little by little,” Michelle said.

Tyler was diagnosed with the disorder in February 2005, and his parents established the nonprofit Tyler’s Hope for a Dystonia Cure Inc. in December of that year as they’ve fought for more than three years to find a cure.

In the meantime, the two have used Deep Brain Stimulation surgery twice to help with some of Tyler’s painful symptoms, but it is not a cure.

The family is undecided on whether or not they’ll treat Samantha the same way.

Nevertheless, the urgency to find a cure is even greater now that the disorder has found its way to their daughter, and there’s the same 50 percent chance their 3-year-old son, Luke, may carry the gene as well.

“Now it’s at a point where this is all great and everything, but we’ve got to speed things up,” Rick said. “And we have to make sure that we funnel that money in the best way possible.”

The two have raised about $1 million so far, and any money the two manage to raise will be used to fund research to prevent and cure DYT-1 Dystonia, while creating awareness for it.

The Staabs hope to establish a Shands brain repair center for basal ganglia disorders, particularly for treating dystonia and Parkinson’s disease.

Although the family is doing everything it can to find a cure, it doesn’t help put Rick’s mind at rest.

“Honestly, I’m not sure if it makes me feel any better,” he said. “The only thing to do is to fight back. This keeps our sanity to fight the battle we’ve been thrown into. It’s like a cruel game.”

Several benefits have been held lately, and a golf tournament at Meadowbrook Golf Club on Saturday will be in support of Tyler’s Hope, as will an Atlanta Support Group fundraiser on April 26.

Rick and Michelle say they continue to be overwhelmed by the community’s support.

A crowd of 320 people showed up to the Leadership Gainesville Community 5K Run on Wednesday, and the University of Florida unexpectedly asked the family if it could hold the Gators Run for Tyler benefit last Sunday to benefit Tyler’s Hope, which it did.

“The support has been unbelievable,” Rick said. “They say in times like these you find out who your friends really are. Well, they’ve come out of the woodwork.”

“The community has been great through this whole ordeal,” Michelle said. “Our kids have such a positive attitude, and they smile about everything and it embraces the whole community.”

For more information, to make a donation or to purchase a Tyler’s Hope product, visit http://www.tylershope.org.




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