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Saving Benny and Josh: Turning Tragedy into Purpose

February 27, 2018 | by Dr. Yvette Alt Miller

Jennie and Gary Landsman are doing everything they can to help find a cure to their sons’ rare and fatal disease.

When Jennie and Gary Landsman were faced with the unthinkable – a rare, fatal disease in their two young sons – they responded with uncommon strength, pledging to raise over a million dollars to fund a cure. In an exclusive interview, Jennie Landsman explains how she finds strength to enjoy each day, and to work towards this massive goal.

For years, Jennie Landsman had been dreaming of having another baby. She was recently remarried after a divorce, and her older son Michael wanted nothing more than a baby brother. He’d prayed for one, Michael confided in his mom, and was frustrated it was taking so long.

In 2016, the family’s dreams came true and Jennie gave birth to an adorable baby boy they named Benny. Jennie soon found herself expecting again, and she and Gary were overjoyed with their growing family. Even though Benny seemed to be missing some developmental milestones, the Landsmans didn’t realize anything was amiss. Their family doctor reassured them that Benny would soon catch up. When they became increasingly concerned, the specialists they visited had the same message: there was nothing to worry about.

Benny Lansman, age 1

It was only at a Hanukkah party when Benny was six months old that Jennie became truly worried. The Landsmans were hosting a party and Jennie’s sister held Benny most of the day. She thought something didn’t seem right. Benny seemed floppy, unable to support his head. “He’s just a mushy baby,” Jennie reassured herself about her adorable, “cuddle-bug” of a baby, but she started to pay more attention to his low body tone. Even more alarmingly, Benny began to go cross-eyed when he was faced with a difficult activity. By six months old, he wasn’t sitting up and Jennie and Gary demanded more answers about their son.

“It’s crucially important to be informed,” Jennie advises now, recalling her struggles to get a medical answers for her son’s increasingly obvious problems. Some doctors dismissed Benny’s symptoms, insisting that he was still within the bounds of normal development, even though Jenny and Gary sensed something was wrong.

Although she didn’t realize it yet, Jennie had also been let down by doctors years earlier, when she did genetic testing before the birth of her oldest son. Even though she’d signed up for a complete genetic test, it turned out the lab completing her test only set back partial results. Jennie was a carrier for Canavan disease, a genetic disorder, but was mistakenly told she wasn’t a carrier.

When Benny was eight months old, the third neurologist that the Landsmans consulted did a full slate of tests on him.

Soon after Benny’s testing, Jennie gave birth to her third son, a winsome little baby they named Josh. Two weeks after Josh was born, the family received a terrifying call: their neurologist told Jennie the results were back and she had to take Benny to a geneticist – today. That appointment was one of two-week old Josh’s very first outings, Jennie notes ruefully, recalling the day that would change their family forever.

Benny and Josh

The geneticist explained that Benny had Canavan disease, a rare degenerative disorder that affects the white matter in the brain. Canavan disease generally becomes apparent at between three to six months. It is progressive, causing gradually diminishing motor skills and cognitive ability, and is caused by a lack of an enzyme in sufferers’ genes.

“So my first question was when can we start giving him the enzyme?” Jennie remembers. She was crushed when the geneticist explained that was impossible: Canavan disease has no cure. “Devastated isn’t the word,” Jennie says. “We were completely broken. You go from just thinking your kid has a delay to hearing your child has a fatal childhood disease.”

The geneticist suggested that Josh, just two weeks old, be tested for Canavan disease as well. It turned out that both Jennie and Gary were carriers for the disease, meaning that Josh had a one in four chance of developing the disorder. Josh gave a blood sample, but at first Jennie wasn’t too worried about him. “I was in denial about Josh,” she says. “How could God possibly make Josh sick too?” Tragically, the results came back and showed that Josh had Canavan disease as well. Both boys had “a death sentence”.

For a long while, Jennie was overwhelmed by the tragedy. “It feels surreal. It doesn’t even make sense. How can this happen? It’s like a nightmare.” For weeks, she felt like “we were waiting for the end – that’s all I could think about, that’s all I could see: they’re slowly degenerating, losing their bodily functions, losing their mental capacity.” Each time she held one of her babies, she’d wonder how much longer she’d be able to hold them.

Not only did she worry about her children dying early, but she was hopeless at the thought of them suffering.

The Landsmans

After weeks of depression, Jennie recalls, “one day, I said enough is enough.” Jennie’s misery was preventing her from enjoying the precious time she did have with her babies. “Am I going to cry every time I sit here holding my baby?” she asked herself. Jennie realized that if she wants her children to have a happy mother, to remember happy times during their childhood, she was going to have to change the way she reacted. “I’m going to choose happiness,” Jennie decided.

That’s a difficult decision for anyone to take, especially given the very real challenges Jennie and Gary and the rest of their families face. “At first I was living minute to minute,” she says. Jennie made a huge effort not to think about the future, but to just enjoy each moment instead. “I’m going to enjoy holding my baby because right now I have my baby.”

Josh, 4 months old

Through their research of Canavan disease, Jennie and Gary made a startling discovery: about 20 years ago, when gene therapy was first being pioneered, scientists did research on Canavan disease and even conducted some early clinical trials of treating sufferers. The trials were small and the results mixed, but some patients were able to have some relief from the worst ravages of the disease. Given the enormous leaps in medicine and medical research since then, could present-day researchers come up with new treatments? Research in Canavan disease also benefits other degenerative diseases such as Alzheimer’s and MS, making this work even more important and pressing.

Despite the importance of this work, there is very little funding for research into Canavan disease. Jennie and Gary got in touch with researchers in the field and asked what it would take for them to work on gene therapy for Canavan disease. They also had a simple message for these scientists: “We need this for our kids.”

The costs are daunting. Major pharmaceutical companies typically fund this sort of research which can run into the millions of dollars. Undeterred, the Landsmans pledged to raise $1.2 million dollars to fund major medical research, and started a Go Fund Me campaign to help with this monumental goal.

In just two months, they have nearly realized their goal, raising over $1.1 million. “It’s changed my faith in people,” Jennie notes, explaining that thousands of people all around the world have donated money and time, helping them reach their goals.

Much of this aid has come from their Jewish community, with countless people doing what they can to contribute and help. People have pledged amounts large and small, and given of their time. One retired woman in their community has been coming over every day to hold the children and play with them. Benny in particular lacks the motor skills to play with toys, but he enjoys playing. Their teenaged neighbor visits regularly to play with the boys and give Jennie and Gary a break. Synagogues and Jewish schools across the United States and the world have all come together, running fundraisers and sending good wishes.

Josh and Benny with their older brother Michael

This tragedy has also challenged and impacted Jennie’s faith in God. “I feel like there is a greater picture,” she explains. “I don’t know what that picture is, and I don’t know if I’ll ever know it in this lifetime. I don’t know if I’ll ever know the effect that my hardship will have on the world. But I do know that what we’re going through is very significant.” Ultimately, given all the good deeds that are being done in Josh and Benny’s names, all the work and all the effort, Jennie feels sure that something good will come from their experiences. “I do feel like there’s something great that will come out on the other end. It has a purpose.”

One lesson Jennie hopes people can learn from her experiences is to choose to be happy and wants people to know: “It’s important to be grateful for whatever you have, no matter what it is.”

Jennie and Gary are nearing their Go Fund Me goal, but their work is far from complete. Benny is now 19 months old and Josh is six months old. The Landsmans are in a desperate race against time to help researchers find a cure while the boys can most benefit from one. You can help contribute to funding research into Canavan disease by clicking here

Please pray for the complete recovery of Shalom Binyamin ben Shaina Tova and Yehoshua Natan ben Shaina Tova.

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