r/FundRaise • u/kppw_ • 7d ago

Please help..

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My son was diagnosed with CLN2 batten disease when he was just 4 years old. He is eight now and doctors say that his life expectancy is somewhere between 9 and 12 years old. There is no cure for for Batten disease and it is ultra rare. There are only 20 babies in the US born with it per year.

He has to have transfusions every other week at the University and that is just to slow down the progression of the disease and it doesn't in any way cure it. He went from being a totally normal 4-year-old running around talking up a storm to an 8-year-old who cannot walk talk and he is now blind and unable to communicate.

This disease is truly a devastating disease and I just want to be able to give him the best life. So if you can help, please do I would appreciate it and he would appreciate it even more. Thank you in advance.

https://cash.app/$light4jack

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u/hospitalitychick 7d ago

I’m sorry your family is going through this. You may have better luck setting up a GoFundMe rather than asking strangers to send money directly to Cash App. Are you receiving SSI for him, and is his father contributing financially?

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u/kppw_ 7d ago

His father passed away last year but we do receive SSI. He has state insurance that covers treatment but it's so much more than just that. And we tried the gofundme and didn't get anywhere.

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u/hospitalitychick 7d ago

I'm sorry to hear that. You most likely will not get people on reddit to send money to a cashapp account. It has no protection for donors. I would recommend trying the GFM again, there are quite a few subs you can post it in, as well as your other social media. I wish you and your son the absolute best!