I just found this group - now I am wondering if it is even still
active?
I just got the diagnosis on the 18 grandson I am raising that he has
this disease. He has had many problems for a long time now and when
I complain to doctors about it, they would just ignore me.
I would like to know more about this disease from real peole who are
involved with real children who do have it - not just a technical
view of it from a doctor.
I have an appointment with his doctor on the 20th of November and
they want to talk to me more about it.
Thank you for any help you can give me -- Dani