Taking care of a sick child — and watching that child suffer — has to be one of the worst things a parent can go through. The emotional struggle can also be compounded by the financial struggles.
To ease the financial burden of their children’s expensive (and often experimental) treatments, one family launched a GoFundMe campaign for their children, 17-month-old, Benny, and 4-month-old, Josh.
The Landsman family’s two children were recently diagnosed with a fatal genetic disease called Canavan, the genetic mutation for which is more prevalent among Ashkenazi Jews. As their mom, Jennie Rosenblum, explained on their donation page, Canavan is “a progressive brain disorder caused by a genetic mutation that affects little children.”
This means Benny cannot crawl, sit up, roll over, hold his head up, or speak, and little Josh is expected to show signs of the illness in the coming months. As they get older, the boys may suffer seizures, and lose their ability to swallow and see. Most children diagnosed with this disease die by age 10.
As you can imagine, the Landsman family is devastated, but isn’t giving up. The parents are currently trying out experimental treatments that can slow down the degeneration, and they are looking toward gene therapy — all of which is quite expensive. Benny has been taking a new medication and trying physical, occupational, feeding, and developmental therapies, but in order to continue to do so, the family needs to raise a lot of money. Their current fundraising goal is $600,000 — more than 150,000 of which has been raised in the past day.
The money, as Jennie writes, will “help bring this treatment [for gene therapy] out of the lab and available for our boys to use.”
Watch the Landsman family speak about their situation below:
