‘Aiden’s Story,’ Feb. 23

In February, the Frontiersman published one of its more memorably features of the year, the story of 12-year-old Aidan Grasmick, a Palmer boy who loves water slides and Harry Potter.

Like most 12-year-olds, Grasmick enjoys attending sporting events and couldn’t keep from grinning ear-to-ear when he had a chance to touch the Stanley Cup, the storied championship trophy for the National Hockey League. He’s well traveled, having visited Seattle, Portland, Ore., Chicago and Pittsburgh. It’s almost enough to be the envy of other children his age.

Almost.

Grasmick suffers from severe generalized dystonia, a rare neurological disease that causes painful muscle contractions in many of his major muscle groups — his neck, jaw, arms, legs, back and trunk and even eyelids. There is no cure, and it’s degenerative.

“Dystonia is progressive,” said his mother, Sharry Grasmick. “Not everyone has it in their whole body. It can strike children and unlike a movement disorder like tremors, instead of shaking, his muscles spasm and twist the body. Aidan spasms from his eyelids to his toes.”

In February, Sharry and Aidan were at the Ronald McDonald House in Pittsburgh, where they had been since September 2009. He had undergone multiple surgeries and was preparing for a procedure that could, hopefully, reduce or end his pain.

“His dystonia has been very progressive in the past two years, causing significant changes to his physical functioning,” Sharry said. He requires an increasing amount of medication, but it’s not stable or consistent, “and he sometimes requires significantly higher doses of medication to stop him from experiencing dystonic storms.”

At times, Aidan can sit in a chair or recline flat on a bed for more than an hour, his mother said.

Then there are the times when he “storms,” when his contractions are unrelenting.

“When the pain of dystonia overcomes him, Aidan’s jaw often locks painfully, although at other times he is able to speak, though not clearly.”

It is hope for things like water sliding and being with the rest of the family, and especially for easing Aidan’s pain, that drives the Grasmicks, Sharry said. While she’s with Aidan in Pittsburgh, her husband, Chad, daughters, 10-year-old Mailena and 14-year-old Jade, are at home in the Valley.

“It’s been really hard on our family,” she said. “Aidan at this point is fairly severe, he’s had to be intubated to breathe at times. … But he is such an amazing person that he’s able to come up smiling over and over again. Every little thing he does is so hard, but he doesn’t ever give up trying to do things. You can’t give up.”

In March, we updated Aidan’s story. The procedure went well and he has since returned home to the Valley. Look for an update on how Aidan’s doing in early 2011.