Parents Desperate to Find Cure for Toddler Sons Who Could Die From Rare Disease by Age 10

Benny, 1, and 4-month old Josh have Canavan disease, a rare genetic neurological condition that causes severe cognitive disabilities


Jennie Landsman became concerned when her son Benny stopped reaching developmental milestones at 6 months old.

“I started to get a little bit concerned when Benny wasn’t sitting up on his own,” Landsman, 33, told TODAY. “Up until then, he had been developing normally.”

Doctors told Landsman and her husband, Gary, that they had nothing to worry about. But after the birth of their second son, Josh, they decided to take Benny to see another neurologist, who confirmed the heartbreaking news.

Both Benny and Josh have Canavan disease, a progressive neurological disorder, according to the Canavan Foundation. Children with the illness experience developmental delays and most do not live past the age of 10.


“I had no clue how devastating it was,” Landsman told TODAY of the news.”The doctors told us there is no cure. There is nothing you can do — just take them home and love them.”

But that wasn’t good enough for the couple.

Landsman and Gary vowed to help their sons, and learned about a gene therapy that could treat the disease, TODAY reports. However, it would cost about $1.2 million to begin developing the therapy. So, the couple set up a GoFundMe page.

“Waiting for everything you love to be taken away is not a life,” the couple wrote on the page. “We are desperate to fast-track funding to bring this gene therapy out of the lab and into the hands of patients like Benny and Josh.”

Meet the Dad Who Created the Viral Superhero Photo Shoot for Children With Disabilities

They have already raised more than $400,000. The couple noted on the page that they hope the treatments could save their sons and other children suffering from the disease.

“They are happy little dudes,” Landsman told TODAY of the boys. “You can’t be sad when you’re around them”

She added that their 7-year-old brother, Michael, has been trying to help.

“He started reading sci-fi books and coming to me with way that they can fix their genes,” she said. “It is heartwarming and heartbreaking at the same time.”

Related Articles