Young actor enjoys limelight, if not sunlight
CHARLESTON, W.Va. -- Decked out in pink and dressed vaguely like a pig, 8-year-old Caden Chapman complained about his costume.
"Mom, I'm hot," he groaned.
In fact, Caden did look a little pale and flushed. Ten seconds before he sat down, the third-grader at Eastbrook Elementary had been scampering upstairs with some of the other kids rehearsing for the Alban Arts Center's production of "Charlotte's Web," which continues this weekend.
Caden had the plum role of Wilbur, "Zuckerman's Famous Pig," which, in this case, called for him to wear a pair of fuzzy pink overalls and a cap with pig ears sewn on it.
Another boy his age (and many much older) might blanch at the thought of having to wear such a getup, but Caden didn't seem to mind. After 14 plays in four years, Caden is cool about how he looks. Costumes are just part of the fun -- even if they can get kind of warm.
"We got started with this when he was 5," said his mother, Paige. "We haven't had a break since," she said, "but this," gesturing toward the theater around them, "has been a blessing."
Local theater, she explained, has been something they can rely on for Caden.
Inside the theater, Caden is relatively safe. Inside the theater, he's just another slightly hyper kid hanging out with other slightly hyper kids.
It's outside the carefully controlled environment of shadows and lights, in the real world, that's where things can get scary.
For lack of a better way to put it, Caden is allergic to the sun.
Caden has alternating hemiplegia of childhood, a rare neurological condition that causes strokelike seizures. Symptoms of an attack can include loss of motor functions, loss of sight and cognitive impairment, and muscle spasms.
"It feels like 'boom,'" Caden said, looking up and simulating an explosion with his hands.
These episodes are extremely debilitating and potentially permanently damaging.
After an attack, his mother explained, Caden forgets things he's learned and it sometimes takes awhile to get them back. She also believes that his condition has probably affected how her son can learn, but so far it hasn't severely impacted his ability to learn lines.
Still, Caden has been mostly lucky.
Children with alternating hemiplegia of childhood frequently have developmental disabilities and mental impairment brought on by the damage caused by the seizures. About 50 percent develop epilepsy by the time they're Caden's age. Caden doesn't have epilepsy, and other than some dodgy handwriting and trouble with math, he seems like a pretty normal kid.
Factors that trigger episodes vary from person to person. For some, foods such as chocolate can cause attack. For others, it's emotional stress or vigorous physical activity.
Caden's seizures are triggered by bright light and heat: sunshine.
Paige said they knew early on that something wasn't right with her son. One morning, as she was dropping Caden off at her mother's before work, she noticed her son seemed to sag to the left in his car seat.
"It looked like a stroke," she said.
The pair took him to the hospital. Doctors did a CT scan, but then Caden went to sleep, and when he woke up he was better.
No diagnosis was pinned down until after a family vacation to Hawaii. Under the tropical sun, Caden had a major episode that left him blind and barely able to move.
Doctors performed more tests and more tests and finally came up with a diagnosis, which gave an explanation, but not a complete one.
The cause of alternating hemiplegia of childhood is still a mystery. The extremely rare disorder is considered to have some genetic component, but there isn't a lot of evidence that if one child in a family is born with the condition, siblings will also have it.
"They think it might have something to do with some people with migraines," Paige said, "and I get migraines."
But she added that she didn't start getting migraines until a few years ago.
There is no cure for Caden's condition, but there are ways to manage it and reduce the likelihood of an attack, although Paige said the attacks don't always appear to have a rhyme or reason.
"Something he did one day could trigger an attack the next day or even a few days later."
To minimize triggers, Caden doesn't play outside like other kids. During the bright and warm spring and summer months, he spends more time inside. When he goes outside, even in the kinder autumn months, he's supposed to wear a hat and special glasses.
There are medications that are supposed to help, but Paige said they're hit and miss. Sedatives meant to get Caden to sleep had the opposite effect. She said they're trying something else that's helping -- so far -- and there's supposed to be a promising drug in Canada, but it's not available in the U.S. yet.
After an attack, the only treatment is sleep. Sleep starts the process of putting Caden back to right, but it's not an instant fix. Getting back to normal can take weeks, which makes school, already a challenge for the boy, even more difficult.
"No one knows what to do with him," she said. "Teachers get frustrated because he excels at some things. Sometimes he needs help getting started -- and just sometimes he gets it and other days he doesn't."
For example, after an episode, he might have trouble recognizing his letters for a while until it comes back to him.
Otherwise, however, Caden seems like a pretty normal 8-year-old boy, albeit one dressed in a pig costume. He likes riding his bike and absolutely loves professional wrestling.
His favorite WWE superstar is John Cena.
He's also a huge movie fan.
"Caden doesn't just watch a movie, he becomes the movie," Paige said, acknowledging that he can kind of drive everyone crazy re-enacting scenes from films he enjoyed.
His favorite actor is Johnny Depp, who happens to share the same birthday as Caden.
"His grandmother helped him write letters to Johnny Depp and Ellen [DeGeneres]," Paige said and frowned. "He tried to write them himself, but his handwriting was so bad."
While excited to play Wilbur in the Alban Arts Center's "Charlotte's Web," he's looking forward to shows coming up, particularly one in the spring.
"I want to audition for 'The Hobbit,'" he said. "I know a lot about 'Lord of the Rings.'"
Reach Bill Lynch at firstname.lastname@example.org or 304-348-5195.