McMaster University

McMaster University

Boy's 'very rare' illness a struggle for family

Hamilton Spectator
April 18, 2011
By Teri Pecoskie

It was just like any other late summer day.

After some back-to-school shopping and a quick game of hoops at Grandma's, Donovan Charlong headed home with Mom and Dad to watch a movie.

He brushed his teeth, put on his red boxer shorts and hopped into their bed. It was cooler in Mom and Dad's room because there was an air conditioner in there.

They didn't mind. They knew he still wasn't feeling great after the earache and fever he'd had the week before.

He fell asleep before Dad could put the movie on.

Hours later, Melissa Wright and Mark Charlong crawled into bed, careful not to wake their 8-year-old son.

They were just falling asleep when the child tensed up between them.

They didn't know it at the time, but that first seizure was just the beginning.

For more than six months, Donovan's been living in hospitals – first at McMaster University and now at Holland Bloorview, a children's rehabilitation centre in Toronto.

His parents say he's blind now, and deaf. He can't walk and has to be fed through a feeding tube. At his worst, he seized more than 50 times a day, sometimes for as long as two hours. His brain has atrophied and now resembles that of a 60-year-old man. He's unaware of what's happening around him.

His doctors don't know what's behind it.

"They tested him for everything down to rabies," Wright says from Donovan's hospital room in Toronto. The stay-at-home mom has moved there with him while her husband, still locked out from his job as a switchman at U.S. Steel Canada, stays home in Hamilton with the couple's two other children.

"He is a medical mystery," adds Charlong. "They don't know what the root cause is. They said they might never know."

Donovan's doctors – more than two dozen across 12 different departments at McMaster alone – have officially diagnosed him with "status epilepticus," a condition defined by prolonged or subsequent seizures. They say the seizures were caused by brain inflammation, but they can't determine the source of that reaction, despite doing everything short of a brain biopsy to figure it out.

The child's problems were compounded by his failure to respond to anti-seizure medications, said Dr. Jonathan Gilleland, a pediatric intensivist at McMaster.

"It's rare that a child requires more than three or four medications to control the seizures," he said. At this point, Donovan has cycled through 17.

Donovan's diminished response forced doctors to put him into a barbiturate coma for close to three months while they searched for effective treatments – a risky step, given that 50 per cent of patients don't survive it, said Dr. Rajesh Ramachandran Nair, the lead physician in the pediatric epilepsy monitoring unit.

At 1,540 hours, he's also logged more time on McMaster's continuous video EEG than anyone else since the hospital acquired the technology in 2008. The $200,000 machine helps doctors detect seizures in the brain when the body is paralyzed by the coma.

Donovan's doctors eventually managed to get his seizures under control with a cocktail of medication, but they still don't know whether he will recover. They say it's too soon to know how severely the illness has damaged his brain.

"It's very difficult for us to predict where Donovan will be in two or three years," Ramachandran Nair said, adding "it's very rare."

The boy's parents are optimistic he will have improved enough by August to come home, but the struggles won't end there. Caring for him will be expensive – a wheelchair alone can cost thousands of dollars – and there's no knowing what Mark's U.S. Steel benefits will cover at that stage.

"We're always hopeful," he said. "With something like this you have to be."

How to help

The Charlong family has planned a fundraiser to help cover the costs associated with Donovan's care.

  • Who: Donovan Charlong
  • What: Fundraiser featuring a DJ, prizes, raffles and food
  • Where: Stoney Creek Battlefield Legion, 12 King Street East, Stoney Creek
  • When: June 11 from 7 p.m. to 1 a.m.
  • How: Tickets are $15 a piece or two for $25. Contact Jodi Baca by phone at 226-388-7262 or email at jodi_baca@hotmail.com for information or to make a donation
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