Eighteen-month-old Benny Landsman and his baby brother, Josh, are both happy little boys. Not unlike other children, they play with toys, cuddle with mom and take naps. “The boys are delicious,” said their grandmother, Rise Landsman.
But both Benny and Josh, now 6 months old, have missed some significant developmental milestones, like sitting up, rolling over or crawling.
Their mother, Jennie Landsman, noticed something was amiss when Benny was unable to hold his head up by the time he was about 6 months old. She and her husband, Gary, took him to multiple specialists, all of whom told them not to worry — Benny was just experiencing a minor physical delay, they said.
But “[Benny] went from developing normally to being on the later end of the spectrum to missing milestones,” Jennie Landsman told The Jewish Week.
After months of doctor appointments, and the birth of their second son, the Landsmans, who live in Brooklyn and send their older son to the Jewish day school Luria Academy, received devastating answers last August. Both boys were diagnosed with Canavan Disease, a progressive, fatal brain disorder that develops during infancy. While Canavan Disease can afflict people of any ethnicity, it is most prevalent in people of Ashkenazi Jewish descent, currently affecting one in 5,000 Jews. Caused by an inherited genetic abnormality, children affected with the disease fail to reach developmental milestones and have cognitive disabilities. Many do not live past the age of 10.
“I didn’t really understand the gravity of it because you just never would imagine that this healthy, bubbly, happy baby would have this fatal disease,” said Jennie Landsman, 33. “You imagine your children outliving you, not that they are going to live this slow, painful, degenerative life, where they get worse and worse as time passes.”
Jennie had undergone genetic testing years earlier, so she was surprised to learn she was a carrier for the disease, but later found out that the initial screenings didn’t even test for Canavan Disease. Since then, Jennie has become vocal about the importance of genetic testing. “I was so uninformed. I never asked about what I was getting tested for,” she said. Had she known she was a carrier, she would have found alternative methods to improve the chance of having healthy children. “This is a very rare disease, but the fact that it is so preventable [makes it] mind-boggling that it still happens.”
Despite the prognosis, the family began searching for experimental treatment methods. “[The Landsmans] were told by the geneticist, ‘Love your babies because you are not going to have them for long.’ But we all said, ‘No way, no how,’” Rise Landsman told The Jewish Week.
After consulting with several researchers, the family found out that there was a new gene therapy ready for patient use, but it was stuck in the lab, awaiting funding. For the Landsmans, who know that every day brings more cellular damage to Benny’s and Josh’s brains, waiting is not an option.
This past Thanksgiving, Jennie declared it was time to go public in asking for help.
After receiving an overwhelmingly positive response on Facebook, the Landsmans created a GoFundMe page in late November, hoping to raise the $1.5 million needed to start a clinical trial. Although the testing would focus on Canavan Disease, its results have the potential to treat other diseases of the brain, such as Multiple Sclerosis, Alzheimer’s, Parkinson’s and Amyotrophic Lateral Sclerosis.
Thanks to the outpouring of support from family, friends, members of their Brooklyn community and even strangers, they are only $200,000 short of their goal. The Landsmans were stunned by the generosity and kindness. Rise said that last week Jennie Landsman received a letter in the mail. “On the front of the envelope it said, ‘May Hashem bless your children,’ but did not include a name. There was $70 inside.”
The Landsmans hope that the boys can begin treatment soon to stop, or perhaps even reverse the damage. “We have elected to be hopeful rather than despairing,” Rise said.
For now, the Landsmans are focused on raising the needed funds and enjoying their boys one day at a time.
Lily Weinberg edits FreshInkForTeens.org. For additional information, go to www.gofundme.com/savebennyandjosh