When Jennie and Gary Landsman’s son Benny was young, he appeared to be progressing well in his development and communication. Their boy always had big smile on his face, and they never suspected that anything was amiss — until Benny started to struggle with his movement.
“He understood peek-a-boo,” Jennie told PEOPLE. “He would respond with a big smile if you said hello. He just wasn’t sitting up and he wasn’t reaching very well for things.”
Following several rounds of tests, and after the Landsmans had gathered the opinion of numerous top neurologists, the family received some devastating news: Benny and his newborn brother, Josh, were suffering from Canavan disease.
Canavan is a rare, progressive and fatal genetic neurological disorder. According to the Canavan Foundation, the disease is caused by an “inherited genetic abnormality: the lack of an essential enzyme causes deterioration of the white matter (myelin) in the brain, thereby preventing the proper transmission of nerve signals.” The lifespan of children diagnosed with the disorder is just 5 to 10 years.
Jennie and her husband Gary were absolutely devastated by the terminal diagnosis.
“It was really dark, really scary, and there were lots of tears,” Gary said, with Jennie adding that “broken is not even enough of a description” for how she was feeling after getting the news. Doctors explained to the couple that there was absolutely nothing they could do for the boys, and that they should simply “go home and love them.”
But Jennie and Gary were determined to do everything they could to try and save their precious babies. After spending hours browsing the internet for information on various treatments, they struck gold. Jennie found out about a groundbreaking gene therapy that has been proven to reduce and even reverse the disease’s most life-altering symptoms. The only problem? The cutting-edge treatment would cost $1.2 million.
“We have an expectation that the therapy will make a real difference in the lives of these kids,” said renowned neurologist, Dr. Christopher Janson.
Seeing this as their only hope, Jennie and Gary set about the arduous task of raising over a million dollars.
“We had no idea how we were going to do this,” Jennie said. “When you have kids, you know you would do anything for (them.)”
The couple began by simply asking for help. They produced a video explaining their uniquely heartbreaking situation, and then posted the video to their GoFundMe page. Just six months later, they had met their fundraising goal. They are now just over $300,000 short of their new target figure of $1.5 million to cover various mounting costs
“We are so grateful,” said Jennie, calling the staggeringly successful fundraiser a miracle. “I put up a link and people showed up. It’s unbelievable.”
The money raised by their GoFundMe has already covered the costs for other children to enroll in the trial and receive the treatments.
A recent update on the GoFundMe page further explained the reasons for the fundraising adjustment:
“A few months ago I could have never imagined that we would have gotten so close to our goal… We’re almost there, and yet, due to unexpected costs, we need what we had first thought we’d need. 1.5 Million dollars to complete production and set up costs for Benny, Josh and a few other children to receive this life saving gene therapy. We are already set for production, and Benny is scheduled to be the first of the children to receive the gene therapy THIS OCTOBER! But we need to raise just a little more. Please help us get to our goal, and help save the lives of Benny, Josh, and children with Canavan’s disease.”
“This is part of an ongoing mission that Jennie and I are going to have for the rest of our lives,” Gary added.
You can make donations by visiting their GoFundMe campaign here.