Human Interest

Couple Needs $560K to Give Sons, 4 and 3, Life-Saving Treatment: 'We Could Never Do This Alone'

PEOPLE readers have helped raise more than $200,000 to help the Landsmans pay for life-saving treatment for their boys and children worldwide who suffer from Canavan, says Jennie Landsman

Published on June 9, 2020 12:55 PM

Landsman family — Benny, Jennie and Joshua Landsman. Photo: courtesy Jennie Landsman

Jennie Landsman is exhausted but she can’t sleep.

"There’s just too much to do right now," the mother of four tells PEOPLE.

With the lives of her two young sons, Benny, 4, and Josh, 3, on the line, Jennie, 36, of Brooklyn, New York, is doing everything she can to save them, since time is not on their side.

“I have been staying up until 2 a.m. and then waking up at 5 a.m. to go back to sharing their story and asking people for help,” she says.

“I feel like I have to use every ounce of strength I have even though I’m so tired,” says Jennie, also mom to Michael, 10, and Evan, who turned 1 on May 20.

In 2017, when Benny was 13 months old and Josh was just 2 weeks old, they were both diagnosed with Canavan disease, a rare, degenerative and fatal brain disorder that breaks down the white matter in their brains, robbing them of the ability to walk, talk, eat on their own and do things that other kids can do, like run and ride bikes.

Jennie, a yoga instructor, and Gary, who owns Taste Wine Co. in Manhattan’s East Village, spent three grueling years trying to find — and then fund — an impossibly expensive cure on their own and then obtain the necessary (and even harder to get) FDA approvals to treat up to 10 children in what’s considered an experimental, compassionate-use trial.

"Pharmaceutical companies are not really interested in developing drugs for rare diseases because developing a drug is outrageously expensive — and a gene therapy drug is even more expensive than any other drug," renowned neuroscientist Dr. Paola Leone, who developed the groundbreaking gene therapy, says in a video for the Cure Canavan Fund.

Now the boys are just weeks away from finally getting the life-changing treatment they need with noted neurologist Dr. Christopher Janson of Dayton Children’s Hospital in Ohio, who has worked for years with Dr. Leone.

But the family faces yet another huge hurdle: they need to raise $560,000 for the boys' upcoming surgeries and hospitalizations, not to mention $280,000 each (up to $2.2 million) for the other six to eight children in the trial.

“Being so, so close, we can almost touch it, but we still need to make this huge leap before we can arrive at the finish line,” says Jennie, who started the charity Cure Canavan Fund and a GoFundMe page, Save Benny and Josh Landsman, to raise money to save her boys and other children with the disease.

After all this time, “It’s within reach," she says.

Dreaming of the Day Benny and Josh Will Be Like 'Regular Kids'

Benny and Josh — who love watching Sesame Street and snuggling with Michael, Evan, and their parents — are blessed with easy-going, affectionate dispositions.

“They are so, so sweet,” Jennie says. “They have to work so hard for everything, but despite that, they are so happy and don’t complain.

“I dream of the day where they are just able to be kids, just regular kids, where playing with toys won’t be difficult and where they won’t have to work so hard at everything," she adds.

Jennie says she can’t believe they’ve gotten as far as they have, considering she and Gary had to raise a whopping $5 million over the past three years to save their little boys since insurance doesn't cover experimental treatments.

Starting to tear up, she thanked the thousands of good-hearted people who have helped them every step along the way.

“It’s not just the big donations that have helped us so much,” she says. “It’s also all the people who sent in $5 and $10 — the tens of thousands who did that. We are so grateful.

“Since the May 20, 2020, PEOPLE.com story has been out, we’ve had 7,000 new donors, which is just incredible.”

PEOPLE readers and those who perhaps shared the story with others have donated $200,000 since then, which helped them reach a seemingly insurmountable hurdle, she says.

“We needed $650,000 to pay the lab for the treatment we need for the surgeries, and that brought in one-third of it," she says.

“We had one woman from Canada who saw the story and gave $9,500,” she adds. “They're people who are just strangers and opened their hearts and want to help just for the purpose of helping. It’s beyond me."

“I feel like God is sending these angels and these messengers to help us," Jennie continues. "There’s this greater force out there.”

If the gene therapy works the way scientists believe it will, they will be able to apply what they’ve learned when dealing with gene therapies for diseases such as Alzheimer’s disease, Parkinson’s disease, ALS and multiple sclerosis.

"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," she says.

A Difficult Road

There were many times in the last three years when Jennie became overwhelmed with everything on her plate and wanted to give up.

What's kept her going is her fight to save the lives of her boys and other children with Canavan and all the people who have gone above and beyond to help her succeed.