My child has BPES

I joined this site to find other parents who have a child with a rare disorder. It is hard to find a support group for them. Maybe I can help change that.

lynessatusing1 lynessatusing1
26-30
3 Responses Feb 22, 2009

My daughter was just diagnosed with BPES she is 9 months old

Hey There, We have a little 4yr Girl who has Chromosome 4 Ring Syndrome. Just trying to find anyone out there that may have chatted to anyone with the same. As we are told here in Australia there is only 30 reported cases in the world, and only 1 other in Oz. So if you lovely people know please msg me. Thanks heaps.<br />
And love to your family.

Hey there! We became friends & then never talked yet! How r u & ur Family?