by Mark Ball
Caleb Metherell is a 10-year-old boy fighting for control.
He’d like to be able to say what is on his mind, and enjoy many of the activities that his friends enjoy. But Caleb is in a fight against his body, and it will take more than his own personal desire to win this one.
That’s why his parents, Jim and Cassie, are inviting everyone they can reach to Frontier Field on September 28 to learn more about dystonia, the disease that is attacking their son and nearly 300,000 Americans, and to raise money in search for a cure. The Metherells live just outside of Buffalo, but holding this fundraiser in Rochester is coming home for Jim, who was born and raised in Hilton. He left Hilton in 1998 to enlist in the Army.
“Caleb is growing up in a body that increasingly refuses to do what he tells it to do,” said James. Dystonia is a neurological disorder characterized by excessive, involuntary muscle contractions that result in twisting, repetitive movements as well as sustained abnormal postures. There are multiple forms of dystonia that impact people of all ages and backgrounds. The disease, which impacts an estimated 300,000 individuals in North America is chronic, and currently without a known cure.
Caleb’s symptoms started at five years of age with a mild speech impediment. There was little change for almost two years, until Caleb suddenly began to bend over uncontrollably in an awkward and painful posture.
“It was agonizing for him to stand, or even sit, unless he could rest his body in a fetal position,” said James. “He can no longer speak clearly, and communicates by whispering strained and strangled sounds. He struggles to keep up with classmates, not due to intellect, but because his body won’t allow him to speak up in class, sing in chorus, play instruments, write notes, or otherwise participate fully. Caleb has slowly lost all of these abilities over the past few years. He is not yet restricted to a wheelchair, but does need to rely on one occasionally.”
Despite having medical coverage, Caleb was not diagnosed until he was nearly 9 years old – and after several misdiagnoses. The correct diagnosis came after a positive test for a gene mutation known to cause dystonia.
“It’s a sad reality that there is often a long time between symptom onset and proper diagnosis for most dystonia patients,” said James, “and this can only be improved through greater awareness among the public as well as people in the medical field.”
For Cassie, the social implications of Caleb’s struggle are the most difficult to endure.
“Since he is unable to speak well he can’t talk on the phone with friends and be in a group conversation like his peers,” Cassie said. “He also is not able to participate in sports and other activities that other kids his age are doing. He loves music, and really wanted to be able to play an instrument but because of the dystonia in his arms and hands, he is unable to.”
While advocating for their son, the Metherells have become active within the Dystonia Medical Research Foundation. On behalf of the Foundation and in honor of Caleb, they are hosting Toss4Dystonia at Frontier Field to raise both funds and awareness of this disease that has gripped their family.
Until a cure comes, it is up to Caleb and so many others to cope as well as possible. Caleb said he is counting on a big day.
“I’m hoping the fundraiser helps get to a cure,” he said.
“There are two things that really bother me a lot,” said Caleb. “My left arm is really hard to control. Sometimes I just hold it down with my right hand at school because it moves around and shakes when I don’t want it to. It also doesn’t do the things I want it to do, like when I’m playing with video games or doing other things. Also, my voice really bothers me. It’s hard for people to understand me when I talk.”
About Toss4Dsytonia
What: The largest Cornhole Tournament in Western New York – Two 64 team tournaments (one competitive and one fun) of Cornhole.
Cornhole, also known as bean bag toss, corn toss, baggo or bags, is a lawn game in which players take turns throwing corn hole bags at a raised platform with a hole in the far end. A bag in the hole scores 3 points, while one on the platform scores 1 point. Play continues until a team or player reaches or surpasses the score of 21.
When: Saturday, September 28 at noon
Where: The outfield of Frontier Field
Who: This fundraiser is open to all. There will be activities for all ages.
Cost: Kids 6 and under are free. There is $5 general admission for 7 and up. Tournament registration is $30 per person.
Contact:
www.toss4dystonia.org
www.facebook.com/Toss4Dystonia
9/22/13
