- I'm Mary, and I just found this site, so I;m not even
sure I;m doing this correctly. I just wanted to
pass on some words of encouragement to all the parents of
AMC children out there. I'm 47, have AMC, and when I
was born, the doctors did not even know if I woud
survive. Then they said i would never be able to take care
of myself, and recommended that i be institutionalized. My
Mom said no way, and altho i spent a good portion of my childhood
in casts and traction, and I am still far from perfect, I am
completely independent; have a full-time job, can drive, walk.
I pretty much can do everything everyone else can do; i just
do it a little awkwardly. I'm sure doctors are more knowledgeable
than they were back when I was a baby, and I didn't have the most
severe form of the disease, but I guess my point is: Listen to what
the doctors say, but take it with a grain of salt. They don't really
know your child and what he/she is capable of. And they don't
rareally know you either. Don't get discouraged; progess may be slow
but it will come. And try to let
them do as much as they can by themselves, even if they take 3 times
as long to do it.
Thanks for listening, and best of luck to all.
- I am a single mother of a two (almost three)year old little boy who
was born with arthrogryposis and vocal chord paralysis,all they can
tell me is arthrogryposis still not sure what type.I am looking to
talk with others who understands about amc,and poss. meet.