Looking for anyone that has a son that has ALD

My son James was diagnosed in 2003 with ALD. It is a rare brain disorder. It`s the fatty tissues around the brain detoring. And because James was diagnose so late there is nothing the doctors can do for him. At the time he was diagnose they gave him 18 months to 3 years to live. In 2004 I had to place him in a rehab. facilatily because I could not take care of him by myself. That was one of the hardest things I had to do. I miss my son dearly. I do see him about every other week. But that isn`t enough. I do talk with him on the phone every night. He can`t talk back he lost the abililty to do that. He does makes baby sounds. Sometimes but he is loosing that too. He cant feed himself so he eats puree food all the time. He does have a g-tube so he can get all of his meds and water flushes threw it. he doesn`t drink enough so they have to do water flushes on him. He is in briefs and has a condom cath on since he cant tell you when he needs to go to the bathroom. He cant walk. He use to be able to stand and pivot but within the last week he cant do that anymore either. Its just so terrible that this monster of a disease can do this. I really think I am loosing my son fast.