Couple Needs $1.2M to Save Sons, 4 and 3, from Disease: 'A Long Road Ahead But We're Hopeful'





“We were so incredibly grateful,” she says. “So much money came from everyday people, people who don’t know us. They want to save Benny and Josh. It makes me cry. People have so much love to give. It changed my view of the world.”

Not only did the Landsmans need treatment for the rare disorder, but they also needed FDA approval, a very difficult goal to reach, especially for two middle-class parents with three children and jobs.

“That was the biggest hurdle,” she says.

The FDA required much of Leone and the Landsmans, including paying for pricey large animal and primate studies to make sure the treatment was safe — and effective.

“They wanted us to do everything at a pharmaceutical level, as if we are a pharmaceutical company,” she says.

When the first round of children have received the treatment and it’s proven to have worked, the gene therapy will then be ready for a full-blown clinical trial, she says.

“Then any kid with Canavan can basically go into the trial,” she says.

The entire journey has been miraculous, says Jennie.

“Somehow, I really think it was the hand of God," she says. "We have a long way to go, but we're hopeful."

One of the biggest miracles for them came in the form of Dr. Leone, who has worked tirelessly for more than two decades to help children with Canavan.

“We saw a neurologist who has known her for years, and he said, ‘That woman has her own elevator straight to heaven,’” she says.

Some might say so does Jennie.

To help Benny and Josh, visit their GoFundMe page, Save Benny and Josh Landsman, or visit CanavanCureFund.org.

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