Normal is a state of mind. It means standard, regular, common. If you ask Tyler and Samantha Staab, they are normal.
Tyler’s favorite video games are the “normal” ones like Call of Duty and Need for Speed; Samantha plays volleyball on the Red Hots club volleyball team or, as she called it, “the normal team”; Tyler made a “normal” transition into high school; their “normal friends” do “normal things”; and their relationship with each other is “normal—we fight a lot,” Samantha said.
But some of the Staab children’s norms are not so normal.
Tyler gets a normal Botox injection in his left hand every three months. Two years ago, Samantha was unable to walk and constricted to a wheelchair, but three brain surgeries later, she’s walking and back to “normal.” For eight months when he was 7 years old, Tyler visited doctor after doctor, seeking diagnosis for the disease that was slowly crippling his body.
“At first it was scary,” he said. “It got normal after the first one.”
Tyler, 15, and Samantha, 12, have DYT1, a genetic form of Dystonia, which is a neurological movement disorder that causes involuntary muscle contractions, which result in unusual, sometimes painful, bodily movements and positions.
Most people begin to show symptoms at age 7, and they progress for about five years before the disease reaches a plateau and the symptoms remain stagnant. The earlier the symptoms begin to show, the more severe they tend to be.
The Staabs first noticed Tyler’s symptoms three months after he turned 7, when his elbow started shaking uncontrollably while he was shooting basketball. By the time his sister was the at the same age, about three years later, and she started walking backward and skipping with more ease than walking forward, Tyler’s Hope was already seeking a cure.
“We kind of looked around at different foundations to help us get some information, and we realized that, for most of them, the money not only went to Dystonia, but most of it went to Parkinson’s too,” said Tyler and Samantha’s mother, Michelle. “We knew that was curable, so we wanted to start something that focused mainly on what he had.”
Through its various fundraisers, like annual golf tournaments, wine mixers and motorcycle events, Tyler’s Hope has raised about $3 million for Dystonia research, bringing in top researcher Dr. Yuqing Li to the University of Florida.
A driving force behind the organization and its supporters is that DYT1 Dystonia is a nondegenerative, single-gene defect. Researchers know exactly what protein the gene mutates, which narrows their focus and bolsters their belief not only that the disease is curable, but that the cure could be found within Tyler’s and Samantha’s lifetimes.
“When it first started out, quite frankly, it was a way to put it out there and let people know how curable a disorder this was,” said the children’s father, Rick. “Dystonia was a bully, and we need to stick up to those bullies.”
But Tyler and Samantha do not succumb to the bullying. Inability to stand up straight to serve the volleyball doesn’t suppress Samantha’s competitive spirit. Difficulty speaking doesn’t subdue Tyler’s outgoing personality or eagerness to communicate.
That, Rick said, is not normal.
“They have so many things they could just play the victim rule,” Rick said, “but they do exceptional things under exceptional circumstances.”