HARRISON, NY (WCBS 880) – When Jordana Holovach’s son Jacob was six-months-old, doctors diagnosed him with Canavan Disease.

WCBS 880’s Sean Adams reports

“I was basically told to go home and watch him die, that there was really nothing that we could do. It was a rare disease. It’s a brain disease that affects the white matter of the brain,” Jordana Holovach told WCBS 880 reporter Sean Adams.

She found a research team.

“When I called them, they were shutting their lab doors down. They just did not any further funding and I said, ‘Stop. No. I’m gonna provide the funding for you.’,” said Holovach.

Gene therapy stopped the progression of the disease. Jacob is now 15.

“He is a very dependent. He’s in a wheelchair. I’m proud to say that he attends our local middle school. We went from ‘Go home. Watch these children die’ to ‘They’re something. We’re working on something. There is hope.’,” says Holovach.

Holovach founded Jacob’s Cure and has raised $10 million so far.

LINK: Jacob’s Cure

There’s a chance to raise $250,000 more through the Pepsi Refresh Grant, which she says “is just an unbelievable opportunity for a lot of different causes out there.”

She’s asking everyone she knows to go vote online.

She says, “You can vote three ways once a day until January 31st.”

Adams asked, “What would $250,000 mean to your cause?”

She answered, “It would mean life-saving stem cell surgeries for about 25 children. Please, please, please vote for Jacob’s Cure.”

Comments (3)
  1. Karen Ferrandi says:

    Jordana you are such an inspiration to us all! We the Ferrandis and friends vote daily and we feel so lucky to have you as a figurehead! Love and all good things to you, Jacob and all your family and our Olivia who is doing so well. Great things for the New Year will happen, I feel it in my bones! Big love here! Karen and Franco Ferrandi, Sacha, Jamie, Olivia and Simone Ferrandi. XXX

  2. Stephen Madey says:

    Who cares about the editing…It’s the content that’s important. Jake is a great young man with a very wonderful and determined mother.

  3. James says:

    This article desperately needs editing. It is rife with typos and grammatical errors.

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