Hi Maria
sorry I dont post often here, but just wondered have they said that the
other name for Bannayan Zonana could be Bannayan Riley Ruvalcaba
syndrome?
Not sure, but think they might be the same. If they are you may find
some more info by searching the above on google. I am not sure if there
is a support group for BRR but I do think there is more information on
there somewhere as Finn my son was tested for this and I remember
searching it. His was negative.
Miranda
--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "mariaandliam"
<mariam8564@...> wrote:
>
> Hello!
>
> My name is Maria and I have a son Liam who is 27 months old. A while
> ago I was a "lurking" member of the Sotos Group as I was suspecting
> that my son might have it. Well he ends up having Bannayan Zonana
> Syndrome. We just found out about this through a PTEN gene test.
> Anyone else here with a child with this Syndrome?
>
> Thanks so much!
> Maria
>