This Is How You Respond To Your Child’s Chronic Illness

Tyler Staab was like any other seven-year-old boy—energetic, rowdy, and super interested in sports and playing outside.

But in February, 2005 his whole world changed, and that of his parents.

WCJB in Gainesville, FL reports, while Tyler was playing basketball, his father noticed that his arm was shaking uncontrollably when Tyler would bring his arm in. The unusual symptom drove his parents to schedule a doctor’s appointment, and from there began their “long and disheartening” journey.

Tyler’s new lifestyle became accustomed to being in and out of hospitals, multiple examinations by many specialists, and just as many tests and treatments. Unfortunately, every appointment resulted in a misdiagnosis or a heart-wrenching dead end.

But, it was during one of Tyler’s many hospital stays that a blood test confirmed that he had Primary Generalized Early-Onset Dystonia.

Unfortunately, the earlier a child shows symptoms of Dystonia, the more debilitating the symptoms typically become.

The disease is a neurological movement disorder that affects the central nervous system. It’s characterized by involuntary and painful muscle spasms and affects more than 250,000 people in the United States.

Fast forward ten years and, unfortunately, Tyler is a teenager with severe disabilities. Sure, he grows physically and mentally as any teenager would, but his body is a different story. It’s twisted—he can’t speak or eat without difficulty, he can’t walk, play with kids like he used to, or even read a book.

That’s where “Tyler’s Hope” comes in.

Tyler’s Hope Foundation was created to raise dystonia awareness. Tyler’s family doesn’t want any child to experience what Tyler has had to endure in his short life.

In the past 10 years, the efforts of Tyler’s Hope have allowed more than 20 years of research to take place in only 10. During a fundraiser held in early August, Tyler’s family expected to reach their goal of raising $500,000 to continue funding for a cure and raising dystonia awareness.

“We know we are going to find a cure. There’s a lot of really good people that have gotten behind a good cause,” said Rick Staab, Tyler’s father and president of Tyler’s Hope. “We want to help kids that can’t walk or talk or have a hard time controlling their muscles and we know how to do this.”

To check out the full story, hop over to WCJB and see the exclusive video.

No parents should ever have to see their child go through what the Staab family has. Fortunately, their response has been fantastic and resulted in the help of thousands of other children.

Share Tyler’s story to help raise awareness of dystonia and maybe one day a cure will finally be in reach!

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