In 2017, doctors diagnosed Jennie and Gary's two sons, Benny, 13 months, and Josh, two weeks, with Canavan disease. It is a rare brain disease that is both degenerative and fatal. The disease breaks down the white matter in their brains. It causes the kids not to be able to eat, talk, walk, and do things on their own like any other kids.
Jennie Landsman told People that she has so much to do right now. She is doing everything she can to save her now three and four-year-old sons. She has been staying up until two in the morning then sleeps for only three hours to share their story to ask for help.
Couple spent years for treatment of rare disease
The couple also has two other children, Michael, 10, and Evan, 1. They are living in Brooklyn, New York. Jennie is working as a yoga instructor while Gary owns Taste Wine Co. in East Village of Manhattan. They spent years trying to find and fund a cure for their two son's rare disease. They also need to obtain FDA approvals to treat up to ten children for trial use.
Renowned neuroscientist, Dr. Paola Leone developed the groundbreaking gene therapy. She said that companies do not want to develop drugs to treat rare diseases because they are expensive. Gene therapy drugs cost even more.
Half a million dollars for treatment
Dr. Christopher Janson, a neurologist who has worked with Dr. Leone for years, noted that only a few weeks are left for the boys to get their life-changing treatment. The only problem now is that they need to raise $560,000 for the boys' surgeries and hospitalizations.
Other than that, they also need $280,000 for the other six to eight children in the trial. The total amount for the rest of the kids is $2.2 million. Jennie started a charity Cure Canavan Fund and a GoFundMe page to raise money for all the kids with the rare disease.
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Sons are happy despite the struggle
The 36-year-old mother feels blessed with their sons' easy-going, affectionate dispositions. She said that Benny and Josh are so sweet. Even though their sons have to work so hard for everything, they are so happy and do not complain.
She dreams of the day when they could become just like any other kids.
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Jennie thanks donors
The couple could not believe how much they have raised so far. Since the insurance does not cover the treatment for the rare disease, the pair have to raise $5 million for the past three years. Jennie could not thank enough thousands of good-hearted people.
She said that beyond those who gave significant donations, the tens of thousands of people who donated $5 and $10 also made a difference. After their story came out on May 20, 2020, in People, the couple had 7,000 new donors.
The couple has received $200,000 from donations, which are a third of the lab treatment for surgeries. Jennie shared that one woman from Canada donated $9,500. She also said that if the gene therapy works, scientists believe that Alzheimer's disease, Parkinson's disease, multiple sclerosis, and ALS will become treatable too.
Jennie almost gave up in the last three years because she was overwhelmed with everything. Her two sons and the other children with Canavan kept her going and helped her succeed. She said that they are grateful to all the people who have helped them.
