At first, Jennie Landsman didn't think anything of it when her “laid back” son Benny wasn't meeting his developmental goals. But when, at 7 and 8 months, he still wasn't able to roll over, sit up, or support his head on his own, she became worried.
So Jennie took Benny to several neurologists.
In August 2017, she learned that Benny suffered from Canavan Disease, which is a neurological disease that usually gives affected children a lifespan of 5 to 10 years, according to People. Even more, she learned that Benny's newborn baby brother, Josh, also suffered from the disease.
Jennie told People how she felt when she received the heartbreaking news:
“Every time I held either one of my babies, every time I rocked them to sleep, I couldn’t stop thinking, ‘How many more times will I hold my baby?’”
After being told that the disease did not have a cure, Jennie Landsman and her husband, Gary Landsman, were determined to take action to save their sons. Jennie searched the Internet and received contacts of people who have knowledge of Canavan Disease. She found information of a gene that will likely seize and reverse the symptoms of the disease.
Because the therapy costs $1.2 million, Jennie and Gary set up a GoFundMe page in November to help with the cost. Over the next six months, they were able to raise $1.15 million.
Additional costs for the surgery came up, causing Jennie and Gary to raise the GoFundMe to $1.5 million. This will cover the cost as well as pay for MRIs and surgeries for other children to receive this special treatment.
Canavan Disease is a neurological disease that begins in infancy and progresses until it becomes fatal. A lack of an essential enzyme causes deterioration in the the brain and makes it unable to transmit nerve signals.
Children with this disease cannot walk, talk, crawl, or sit. Symptoms of this disorder include:
- Increasing head circumference
- Lack of head control
- Reduced visual responsiveness
- Abnormal muscle tone
According to the National Organization for Rare Disorders, the disease affects all ethnic groups, however, is more frequent amongst people of Jewish descent. The risk for a child born with Jewish descent is between one in 64,000 and one in 13,456. In other populations, carrier frequency is not known.
Jennie said they are “grateful” for all of those who have supported them during this difficult time. The family plans to give additional money raised to other children who are in need of this treatment. Jennie said:
“We have been given so much that we want to give back, too.”