The boy in the uk, that was on tv the other week was Archie wasnt
it? (The 6 stone baby on channel 5??). Archie has MOMO syndrome. His
mum is on a parenting board i use, i might contatc her and redirect
her here.
sarah



--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "finnedward1998"
<miranda.bury@v...> wrote:
>
> Laurie HI and welcome to the group.
> Thanks for sharing your story - I'm in the UK and I remember
seeing
> pics I am sure of your Zak, now I have seen the baby pic again,
but
> that was before we had a child with o'growth and only now that you
> have posted have I remembered them.
> Apparently there was a program on tv here last week about a baby
with
> o'growth , but I missed it but from the messages I have got it
sounds
> as though the child has SGBS as well but dont know.
> Hope you have found some support from meeting other in a similar
> situation though through your efforts to get to the bottom of the
> issues.
> Our little boy is 6 and is undiagnosed at the moment, with
overgrowth
> syndrome, sotos-like. Dont know if they will ever get to the
issue
> with him, but keep hoping they will find a child who look similar
and
> has similar medical issues, but until then we wait it out taking
one
> day at a time. WE have been told it is definitely not SGBS or
> Beckwith's so we wait and see.
> Kind regards
> Miranda