Cameron Marsh, a Napa boy suffering from adrenoleukodystrophy who was profiled in a Napa Valley Register story in September, died Wednesday, a family friend reported. He had just recently turned 8.
Cameron had been diagnosed one year ago with adrenoleukodystrophy, a disorder that affects the white matter of the brain and the adrenal glands. The disease caused him to suffer a rapid neurological deterioration.
After his diagnosis, doctors expected him to live another six months to two years. He was pulled out of school at Shearer Charter, and his mom, Jina Forney-Marsh, quit her jobs at Safeway and Sizzler to provide round-the-clock care.
Deborah O’Haire, a school nurse with the Napa Valley Unified School District, had been helping the family in an official capacity but also became a family friend.
O’Haire said Cameron died Wednesday morning in his home in his mother’s arms. The Marsh family wanted to extend their gratitude to Napa residents for their generous support.
A fundraiser on Sept. 29 raised more than $15,000 for the Marsh family. Several other fundraisers and additional donations by individuals and businesses also raised money. The Marsh family also was able to find better housing, which accommodated Cameron and his wheelchair.
“The outpouring of support was incredible from the community,” O’Haire said.
The family intends to hold a public memorial service, but the date has not been scheduled.