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

A cure for Canavan is a gateway to treating other diseases such as Alzheimer's, Parkinson's Disease, ALS and Multiple Sclerosis

Benny and Joshua Landsman. Photo: courtesy Jennie Landsman

Nearly three years ago, Jennie and Gary Landsman were told there was nothing doctors could do to save their baby boys, Benny and Josh, who suffer from Canavan disease, a rare, life-threatening progressive brain disorder.

“We were told to just go home and love them,” Jennie, 36, tells PEOPLE.

Now, thanks to the couple’s perseverance as well as a brilliant and tireless scientist and the goodness of family, friends and strangers alike, the boys, 4 and 3, will begin receiving cutting-edge gene therapy this summer that will allow them to finally walk, talk, eat and eventually play, draw and sing on their own.

The only caveat: the family needs to raise $1.2 million in the next two weeks for them to do that.

Benny and Josh. courtesy Jennie Landsman

“It’s a bit stressful,” says Jennie, a yoga instructor who lives in Brooklyn, New York, with her husband Gary, who owns Taste Wine Co. in Manhattan’s East Village, and their four children: Michael, her 10-year-old son from a previous marriage, Benny, 4, Josh, 3, and Evan, who turned 1 on May 20.

The Landsmans. Ulysses Photography

It’s also daunting for a family who has already been through so much.

Since November 2017, just months after the boys were diagnosed with Canavan, Jennie and Gary have raised an unbelievable $4.5 million to save the lives of their boys — and other children suffering from the deadly disease through their charity, CureCanavanFund.org and their GoFundMe page, Save Benny and Josh Landsman.

But they still need more — $650,000 for the lab they’re working with to be able to release the life-saving treatment, and $560,000 for the two boys for required surgery and hospitalization, which will cost $280,000 per child.

Besides Benny and Josh, other children with Canavan will receive the treatment — something Jennie pushed for when she and Gary (with the boys in tow) met with the FDA, which gave its approval to treat up to 10 children in what’s considered an experimental, compassionate-use trial.

Including the other children "wasn't a choice to me," she says. "They're like family now."

That’s not all.

If the gene therapy works the way experts believe it will, scientists will be able to apply what they’ve learned to gene therapies for diseases such as Alzheimer’s Disease, Parkinson’s Disease, ALS and Multiple Sclerosis.

The gene therapy the boys are receiving "is really groundbreaking,” she says. “This is the first time this will ever be done for any brain disease. When scientists figure out how to treat a brain disease like Canavan, they can then use that same technique to go and treat other diseases that affect millions of people.”

Jennie says she will never stop trying to help her boys and other children all over the world.

“I opened this charity, and we're just going to keep it going even after Benny and Josh hopefully get treated this summer,” she says. “I'm going to see this through to the end until this is a drug that's available for the public."

The reason is simple.

“I never, ever want another mom to have to go through what I did. I never want a mom to get the news that there's nothing doctors can do," she says. "I want parents to be told, ‘There's something that you could give them, and they'll be okay.’ That's what I want.”

Overcoming Seemingly Impossible Hurdles

When doctors told Jennie there was no cure for Canavan, she jumped into action.

Late nights on the internet led to contacts in the Canavan world who told her about a promising gene therapy that will likely halt and even reverse the disease’s most damaging symptoms.

Jennie reached out to renowned neuroscientist Dr. Paola Leone, director of the Cell and Gene Therapy Center at Rowan University’s School of Osteopathic Medicine in New Jersey, and her team, who have been working on developing the state-of-the-art therapy for years.

“The hope is that they will lead full, functional lives,” says Leone, whose gene therapy has already proven successful in mice.

The problem was the cost. In order for Dr. Leone to continue her work, she needed $1.2 million to start.

“It was daunting,” says Jennie.

She and her husband made a simple — but incredibly emotional — video with Benny and Josh on their laps that went viral and even caught the attention of Good Morning America and other media outlets, helping them to raise a lot of the money.

Benny, Jennie and Joshua Landsman. courtesy Jennie Landsman

“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.