A Klippel-Feil Syndrome story

I am 31 years old and I found ouut when I was 18/19. I was diagnosed with other deformities sooner but not the KFS. I have an 11yr old son who because of premature labor(30wks) and not being testted for Group Strep B (I think they do at 32 weeks) he got meningitis and now has Cerebral Palsyh and many other medical issues. I am in mild pain since receivinf botox abd not working. But when i try to do "normal" things it triggers the pain. I feel lazy and depressed but know this is what I have to do so I don't have pain attacks (as I call them). Haven't found a doctor who knows about this disease.