EUGENE, Ore. — A 5th grader from Eugene suffering from a rare disorder is about to undergo a major surgery to remove a portion of his brain. When James Dahl began having seizures a year and a half ago, his mother said she never expected the problem to be so serious.
When medication didn’t help and her son began having a handful of seizures each day, she knew something had to be done to help her son.
“It’s limited his quality of life a great deal since that started he’s had to stop swimming, he’s had to stop riding his bike, he’s missed a lot of school,” said Stephanie Dahl, James’ mother.
After the seizures began, his doctors tried medication, but when those didn’t help, James and his family went to California to get help from a specialist. “He had an MRI, a PET scan, 3 day EEG, and they studied his seizures and gave him exams and looked at the imaging,” said Dahl.
Doctors diagnosed James with an autoimmune disorder called Rasmussen’s Encephalitis, a disorder that effects one in a million people. “The only treatment they have is the surgery,” said Dahl.
July 19th, James will travel to UCLA where he will undergo a hemisphere-ectomy, a surgery that will remove half of his brain. “It’s a progressive disorder so if we didn’t treat it he would continue to have the seizures, they would continue to impact his brain and he would eventually be disabled by the impact of the damage,” said Dahl.
His mother said James is hoping the surgery will help him get back to being a kid. “He can’t play video games because the video games trigger seizures, he can’t ride a bicycle,” said Dahl.
To help pay for the surgery and all his other medical costs, James’ family and friends are selling t-shirts that they’ll all wear the day of his surgery. “Right now we’ve really, we’ve raised around $10,000 over the last six months, we started fundraising about six months ago,” said Dahl.
On July 14th the family is having a spaghetti dinner fundraiser at the Irving Grange at 5:00 to help raise money for the hefty medical bills.
The family also set up an online donation website as part of the fundraiser.