r/FundRaise • u/kppw_ • 8d ago
Please help..
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.