Two little brothers who share the genetic burden of Canavan disease have touched many with their heart-rending story.
Benny and Josh, sons of Jennie and Gary Landsman, both have a genetic disorder whose victims typically fail to develop neurologically, are never able to sit up, walk or talk, and have an average life expectancy of about 10 years.
Jennie and Gary first learned last summer that their 1-year-old, Benny, was not progressing developmentally because he had inherited two copies of the Canavan disease gene from them. A few weeks later, their newborn son, Josh, also tested positive for the disease, delivering a second shock to the reeling family. Jennie and Gary want the best for their sons, so they have explored every possible treatment and therapy available, including experimental gene therapy. They have started a GoFundMe campaign to support research on Canavan disease, and their online campaign has spread the word of their sons’ medical challenge, capturing the hearts of people worldwide.
The main story about Benny and Josh is naturally focused on the babies and their parents, but in this family their grandparents are a big part of this story as well. It’s not easy for parents to care for two healthy babies, let alone two babies who need extensive care. That’s where Jewish grandparents can come in handy. Rise Landsman and Shani Rosenblum, two remarkable and involved grandmothers, lavish lots of love and give boundless help to their children and grandsons.
“We’ve chosen to be hopeful rather than despairing,” Rise Landsman of Teaneck, aka Savti, said. “I delight in them.” Rise is a social worker, retired now from a career at the Jewish Home in New York. Her husband, Dan, is a rabbi who gave up the pulpit many years ago and works for a real estate company. Members of Congregation Rinat Yisrael in Teaneck, the Landsmans raised their children in town; their son Gary attended Yavneh Academy and the Frisch School.
Rise loves her grandchildren. “Being with them is therapeutic for me,” she said. “They are 17 months and 5 months old. Benny does not sit up, hold his head up, he never rolled over, he doesn’t walk or talk. He’s still a baby, a floppy, happy, delicious baby.
“I sleep over on Monday nights and babysit Tuesdays and alternate Sundays,” she continued. She noted that Jennie and Gary, who live in Brooklyn, need a lot of help; Gary “owns a retail wine shop, and puts in very long hours. He is not home before 10 or 11 p.m.”
“I love my grandchildren,” their other grandmother, Jennie’s mother, Shoshana Rosenblum, aka Grandma Shani, said. They’re my oxygen.” Shani, who lives in Brooklyn and works at the Yeshiva of Flatbush, pitches in to help every evening. Her husband, Rabbi Dan Rosenblum, works for the New York City Department of Sanitation.
“I work full time, then I go straight to Jennie’s house, where I help out from 5 p.m. to 11 p.m., and Sundays from 9 a.m. to 6 p.m., with my husband, who is there almost every night,” Shani said. “Josh was colicky when he was born, with reflux, crying a lot, but now he is not so colicky. Josh is now all smiles and yummy, and a lot easier to manage.”
“In the summer, we had just heard the news,” she continued. “When we heard about Benny, it was bad enough. When we heard about Josh, it was like being hit by a train for the second time.
“In the summer I was a basket case. I was hysterical over this. Now we have hope. We are on a mission.”
Sometimes it does, indeed, take a village to care for children, and the Landsman family is grateful for all the support available. “There are therapists coming every day, PT and OT” — physical and occupational therapy — “speech, and swallowing, special ed and developmental, as well as doctors’ appointments,” Rise said.
“The therapists are such devoted people,” Shani added. “They are all family, in this together. We’re really united. They are rising to the occasion. They are a great team together. We’re all trying to be normal, and to do normal things.”
Rise talks glowingly about her daughter-in-law. “‘Master’ Jennie is a sixth degree black belt in Pa-Kua, Chinese martial arts, which include meditation, yoga, archery, acupuncture, and martial arts,” she said. “She is a personal trainer, an archer, an acrobat. Jennie is an ashet chayil,” a woman of valor. “She is my hero.”
“Jennie is nursing both of them,” she continued said; that’s because breast feeding apparently helps Canavan babies to do better. “Benny nurses, and he eats solid food. He has a feeding specialist. Therapists help the boys to do the optimum that they can. We are now trying to get Benny to sit up, which is best for his breathing. So we sit him up as much as possible.
“Down the road,” children with Canavan “have feeding tubes, and ventilators, and go blind.”
“When we’re at Jennie’s house we are there to make the kids laugh and to have a good life,” Shani said. She recalled when Jennie’s oldest son Mikey, who is 7, blew up a balloon for his little brother Benny, and let it go. As it flew around the room, “Benny laughed hysterically. Benny has a great disposition and has a belly laugh that’s so contagious, that we just want to laugh with him.
“The boys are 13 months apart, so it’s nonstop action.
“We are always emailing each other,” she continued. “I once texted my daughter in the midst of the real crisis at the beginning: ‘I just want you to know that I have no regrets that Benny and Josh were born. I already have a lifetime of joy from them. We are going to get through this together.’”
Rise Landsman said that in retrospect there were clues of this affliction in her family. Her first cousin’s son, who married into a charedi family, had eight children. Four of them died early, but she had never asked why She later learned that it was Canavan.
She also reported that her daughter, Gary’s sister, had learned of her status as a carrier of Canavan years before, but had not told her family about it until later. Both of Jennie’s siblings, the family now knows, also are carriers.
Gary and Jennie Landsman did not imagine that Canavan would be an issue for the family, because Jennie, who had been tested for the so-called “Ashkenazi panel” of genetic illnesses in 2009, was told that the tests had come back negative. Based on that, the family assumed that there was no need for Gary to be tested.
They were wrong.
“The message is, for genetic tests or for any sort of testing, to ask to see the results, and to keep a copy,” Rise said. “Jennie had thought, ‘I’m negative on everything.’ She went along feeling confident that she was not a carrier.”
She reported that genetics educator and consultant Dr. Nicole Schreiber Agus, who co-founded the Program for Jewish Genetic Health at Yeshiva University/Albert Einstein College of Medicine, “recommends that before every planned pregnancy, test again. People in the Jewish community think that you just have to do it once. But it does change, as the types of tests are updated, and the number of diseases tested for may change.
“I have an issue with Dor Yeshorim,” she continued. Dor Yeshorim is the premarital genetic screening program used by many Orthodox families. “People who test with them have no idea what they are carriers of and are not carriers of.
“Knowledge is power. I prefer to know, to be able to make informed decisions.”
Dor Yeshorim’s screening is designed for Jewish communities in which couples are introduced through a shadkhan, or matchmaker. The organization performs genetic screening of young men and women before they start dating. Each person is given a coded identity but is not informed of carrier status for any genetic disorders. When matches are proposed, the coded test results are checked to determine if there are genetic issues for the prospective couple. “We believe…that in keeping all testing results confidential we eliminate any potential stigmatization of individuals and families,” Dor Yeshorim notes on its website (doryeshorim.org).
According to the website, Dor Yeshorim conducts tests only “that have been determined to be in our community’s best interests.” That includes nine disorders — Tay-Sachs, Familial dysautonomia, cystic fibrosis, Canavan disease, glycogen storage disease type 1, Fanconi anemia type C, Bloom syndrome, Neimann-Pick disease, and mucolipidosis type IV. Gaucher disease can be added to the screening only by special request.
In contrast to Dor Yeshorim’s program, JScreen, a not-for-profit in-home Jewish carrier screening program, is much more extensive. It now tests for more than 200 genes; more than 100 of them point to genetic conditions “common in those with Jewish ancestry.”
Treatments for Canavan
and support for
Once their sons were diagnosed, Jennie and Gary Landsman did extensive research to learn what treatment options are available to help them. As a result, now the family works with the many therapists who help the boys achieve their best physical potentials. Another result of that research is that they know that there are three drugs available for children with Canavan now. “Both boys are on lithium, one of the medications in the Canavan cocktail, meant to slow the disease,” Rise said. “The second drug is to reduce the accumulation of fluid in the brain. Benny has minimal fluid in the brain. The third drug they are not yet on, as we want to see if any adverse reactions occur with the first one.”
The prospect of curing the disorder using gene therapy provides even more hope than does treating its symptoms. The Landsmans have established a GoFundMe campaign, called Save Benny and Josh, to raise funds to support an experimental gene therapy protocol.
“The support and amount of funding has been so inspiring for the family. It’s exploded all over the internet and worldwide,” Shani said. “We get all these messages from people, from Canavan carriers, donations from Japan, and we have people collecting in Israel.”
Other community efforts also have yielded support. “The kids in my school did a tournament and raised money for Canavan research,” Shani said, referring to a fundraising program at the Yeshiva of Flatbush. And she said that Jennie and Gary’s shul, the Kingsway Jewish Center, held a Chanukah appeal, raising more than $40,000. “The amount of support helps Jennie and Gary keep going.”
“That’s the heartwarming and uplifting part of it,” Rise said. “The Brooklyn community has been good. There are girls in the community offering chesed, offering meals, offering babysitting. I am by nature a believer in the goodness of people. I have been floored by the reaction of people worldwide, people who want to help.”