Welcome Maria. I wish I had something to say to make it all better. This disease is heart-breaking.
Since you've been reading around, you know that face to face meetings are usually suggested, and those of us that go find them extremely helpful and a lifeline. Have you gone yourself or looked into them?
There will be other parents along I'm sure who have experienced what you're going through and will have some helpful words.
Hugs to you, stick around, this is a wonderful place!