No cure. Fatal disease. Those words, to a parent, are unimaginable. To be told that one’s child is going to die, most likely by the age of 10, is incomprehensible to most of us.

It was incomprehensible to Jennie and Gary Landsman as well—until it became their reality.

Their story began as the perfect love story. Gary, who grew up in Teaneck and attended The Frisch School, met Jennie, from Brooklyn, “by accident” at a Thanksgiving dinner in 2014. As both had been married before, they did not want to waste time with a lengthy courtship. Both wanted a large family and, in fact, Jennie already had a son, Mikey, now 7½, from her previous marriage.

Jennie recalled, “While we were engaged we briefly discussed genetic testing. Gary hadn’t had it done. I had been tested before getting pregnant with my first and was told I had no genetic markers.”

Jennie got pregnant right away but, unfortunately, that pregnancy ended in a miscarriage.

Jennie remarked, “I thought I had the full Ashkenazi panel the first time. I was told I had. But when we saw the results, I was not tested for everything on the panel. My obstetrician should have asked me about my genetic testing, should have counseled us on it. I saw multiple doctors after the miscarriage and no one asked me any questions about genetic testing. This is something so important that I want everyone to learn from. It is so important to advocate for yourself. I just didn’t know.”

When Benny was born, he was a blessing to the family and a sheer delight. He was colicky, but that did not concern Jennie. The Landsmans later found out that colic is a common symptom of Canavan disease, an autosomal recessive degenerative disorder that causes progressive damage to nerve cells in the brain, and is one of the most common degenerative cerebral diseases of infancy, according to Wikipedia.

Until Benny was 6 months old he progressed normally. “He was a pretty ‘chill’ baby,” said Jennie. “The fact that he wasn’t motivated to sit or crawl seemed to fit with his personality.”

At Chanukah last year, Jennie’s sister, an occupational therapist for adults, noticed that Benny seemed to need much more neck support than should be normal for a baby his age.

“It was at that moment that I realized he wasn’t really hitting the milestones that he should have been. He had plateaued,” Jennie remembered.

Jennie and Gary initiated early intervention, and it was found that Benny needed both occupational and physical therapy. They also took Benny to a neurologist, who said he was “fine” and to come back after he concluded his occupational therapy and physical therapy sessions.

“[Benny] started having vision and focus issue, so we took him to an ophthalmologist. He said it seemed like immature muscle development. The new neurologist, head of pediatric neurology, said that since he wasn’t regressing it didn’t seem degenerative, ‘so let’s see how he does in a month,’” relayed Jennie.

At 11 months old Benny could not sit, crawl or roll over. “He wasn’t doing anything he should be doing,” she reported.

Jennie and Gary took him to another neurologist in the city. This time a full battery of tests was ordered. One of the last was the urine test, which came back showing increased NAA (N-acetyl-L-aspartic acid), meaning it was positive for Canavan disease.

“I got a call at 7:30 a.m. that we needed to come see the geneticist today. I knew that something was very wrong,” Jennie said.

With 13-month-old Benny and 2-week-old Josh in tow, Jennie and Gary went to the city to see the gene therapist.

“She told us he’s missing an enzyme,” remembered Jennie. “I asked when we could start enzyme supplementation. I didn’t understand.”

That’s when the doctor said the words that changed their lives forever: No cure. Fatal disease.

“We were in shock. We had never heard of Canavan disease,” Jennie said. “The doctor spent so much time with us. I couldn’t believe we were given so much time, but then I realized it was because she was telling us our child was dying.”

“She told us to keep doing the therapy, keep him as comfortable as possible and just enjoy our time with him. I couldn’t believe what we were being told,” she continued.

The doctor recommended specific testing to find out the particular gene mutation, and said that Josh should also be tested, “because there is a one-in-four chance he has it also.”

It took two weeks for the results to come back. “Those two weeks were agony. We got the results on Gary’s birthday. Both boys were positive,” Jennie said.

“I was a ‘dead man walking,’” she remembered. “I just didn’t want to be here if my children weren’t going to be here.”

Jennie knew she could not remain in that state. She needed to enjoy the “amazing gift that was my boys until I didn’t have them anymore.” She trained herself to “be in the moment” and not think about what comes next. “I’m functioning better, taking it day by day now. I’m just enjoying the boys.”

Jennie and her family started researching Canavan disease. They found that as time passes, children with the disease start regressing, losing the ability to see, hear or swallow, and some develop seizure disorders. They discovered that gene therapy has helped children maintain much of their function.

“We want the kids to have as good quality of life as possible,” Jennie remarked.

The Landsmans learned that there have been a few gene therapy trials over the past 20 years with positive results. “Not a cure, but positive,” she said. There is a new gene therapy now that is promising, but “is still sitting in the lab. It’s in the works but not being used yet.”

The family also learned about off-market uses for certain drugs. Certain clinical studies showed that these drugs slowed down the degeneration of the brain tissue. They started Benny on these medicines and saw some results after only one week. “It’s not a cure, but it’s something,” Jennie stated.

After conversations with different researchers, they decided they needed to help raise the money to get the gene therapy out of the lab and into the market. They researched the dollar amounts needed, and this past Thanksgiving they launched their GoFundMe page.

“The response that first weekend was unbelievable,” Jennie said, with emotion and appreciation in her voice.

As of this writing, their page has raised $517,419 of their goal of $1.2 million. To help Jennie and Gary raise the balance of the funds needed to provide them with some hope, and also offer hope to other families with children afflicted with Canavan disease, please visit their GoFundMe page at https://www.gofundme.com/savebennyandjosh.

 By Jill Kirsch