Sandhoffs Disease

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My friends have a son who has been affected by this horrible disease. He is 2 months shy of 3 yrs old. I have been spending weeks with them helping in anyway I can. The life expectancy is 3 yrs old and that time is drawing close. Right now he is on morphine and will most likely die in his sleep. Right now it is a matter of days that he will live. I am wondering if anyone else of here knows anyone else who has this terrible terminal disease and can offer any suggestions on how to help. The family has suffered tremendous financial loss but has been fortunate with people making donations. Other than being there and doing what I can I am planning a benefit for them. Any suggestions? I have mentioned it to a few people and they come up with excuses as to why they can't help. Yes we are all going through financial hardships with job loses. It is so hard to donate even 5$ to help this family. Especially with a funeral just around the corner. I don't understnad why people aren't more compassionate until something happens to one of their own family. All suggestions welcomed. I feel like I need to be of more help to this wonderful family who has suffered so much.