Evan Cousineau, a local boy suffering from a rare genetic disorder, is still fighting through his recovery process after a bone marrow transplant this summer.

Tomorrow, people can show support by participating in a motorcycle ride fundraiser from Fullerton to Trabuco Canyon. The ride runs from 9 a.m. to 5 p.m., and costs $25 per rider, $15 per passenger, with a $5 barbecue lunch provided at the end.

Mark Cousineau, Evan’s father, said his family has been overwhelmed by the support they’ve already received, much of it from complete strangers. The motorcycle ride was set up by a friend’s swimming coach; a hockey tournament fundraiser last week was the work of a Mater Dei High School student. Both told the family they were moved by Evan’s story.

“I’ve never met these people,” Mark Cousineau said. “It definitely makes you feel good about people again.”

Nine-year-old Evan collapsed April 30 while climbing out of a pool. He had grown disoriented, lay on his side and gone into a seizure – symptoms that doctors later attributed to adrenoleukdystrophy, a genetic disorder that deteriorates the brain’s neural tissue. The illness most often affects young boys, damaging the senses and often leading proving fatal.

Evan was taken to the Children’s Hospital at the University of Minneapolis in Minnesota, where he’s been for more than 90 days since his bone marrow transplant. His vision and hearing are pretty much gone right now, Mark said, and he’s very weak, able only to vocalize a few words: “Cold,” “hot,” “thirsty.” It’s not clear yet if these are symptoms of a worsening illness or side-effects from his load of medication. Three weeks ago, Mark said, Evan was asleep most of the time, and when awake was in great pain, so his current situation seems to be an improvement.

“How much of what we’re seeing is permanent versus continued improvement, nobody knows,” he said. “It’s not clear how long he’ll stay. He’s picked up a virus not uncommon in transplants… adeno. Usually it takes two to three weeks to ride it out. Here (with Evan) it’s life-threatening.”

You can read more about Evan’s struggle, as well as the thoughts and emotions of his family, at his Caring Bridge site: www.caringbridge.org/visit/evancousineau.

Contact the writer: 949-492-5128 or agood@ocregister.com