AIDAN’S STORY

Aidan Grasmick loves exploring Alaska, sloshing down his family’s homemade water slide and Harry Potter.

Like most 12-year-olds, the Palmer boy 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 12-year-olds.

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.”

Sharry and Aidan are at the Ronald McDonald House in Pittsburgh, where they’ve been since September. He’s undergone multiple surgeries and is preparing for a March 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.”

Weathering the 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.”

From the Ronald McDonald House in Pittsburgh, Aidan can respond to some questions, with the help of his mother. He misses Alaska “a whole lot,” he said.

And while he’s enjoyed activities like attending a Pittsburgh Steelers game (a loss to the Baltimore Ravens) and posing for pictures with the Stanley Cup, “He’d rather be home water sliding,” Sharry said. “We’re famous for water sliding. There’s a worn track in the hill and kids come from all over to water slide. We hope we can be there by summertime to do that again.”

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 intibated 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.”

A $30,000 pump installed in Aidan’s stomach to deliver medicine directly to his spine lasted for a year, she said. “But he just couldn’t tolerate the medication.”

Now, the last option science will allow is a procedure called deep brain stimulation, or DBS.

Like a cardiac pacemaker, DBS accesses a specific part of the brain that, when stimulated with electricity, affects the brain’s pain center, according to the American Association of Neurological Surgeons.

“The hope is to try for him not to hurt anymore,” Sharry said. “Because his dystonia has become very, very painful. The hope is to be able to communicate better and crawl without hurting as much. (DBS) is not to cure it, there is no cure — it’s to arrest it and perhaps turn back the clock.”

A magical spirit

Harry Potter and Aidan have a lot in common. They both have this sense of being alone against the world, which is why Sharry believes her son relates so well to the popular fictional wizard.

“I think it’s that, and not being the amazingly outstanding student or the best looking kid on the outside,” she said. “He likes characters like that. He also loves Martin Luther King’s birthday, he likes to hear his words.”

Because dystonia affects Aidan’s body and not his mind, he can become frustrated when not able to vocalize or express his thoughts, Sharry said.

“He wants to be assertive about doing his own thing, and he’s having trouble getting around now,” she said. “There was a kid years ago who was fighting a big battle to continue to live at home. He was on the radio, and (Aidan) would shout ‘yeah, yeah!’ when the kid would say he wanted to leave the house.”

Aidan now has trouble feeding himself and “it’s become a really serious problem for him, and when you get stressed it (exacerbates) the disease. He is reasonably intelligent, and when he can use his arms he can write sentences.”

As a mother, Sharry said it is very difficult to see her son in pain.

“That’s tough,” she said, adding that while she tries to keep a positive attitude, there are chinks in the armor at times. “The most important thing I hope for his future is that he won’t hurt anymore, that he can have access to the community and friends that he loves. … It’s hard. You want to keep hope, and really, you have no other choice. Otherwise, it’ll just run roughshod over everything you do. You’re supposed to have a very positive attitude, I know, but there are days when I say, ‘I hate dystonia.’”

For now, hope is what Aidan and his family have to hold on to, Sharry said. And when that hope wanes, all she has to do is look at her son.

“He has a gorgeous smile.”

Contact Greg Johnson at greg.johnson@frontiersman.com or 352-2269.