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[Families of Angelman Syndrome] Re: Is Angelman really rare?

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  • monicacarpio_3
    P.S. the clip is called SYNDROME SILENCES CHILDREN --- In familiesofangelmansyndrome@yahoogroups.com, monicacarpio_3 ...
    Message 1 of 10 , Feb 28, 2006
      P.S. the clip is called "SYNDROME SILENCES CHILDREN"--- In
      familiesofangelmansyndrome@yahoogroups.com, "monicacarpio_3"
      <MONICACARPIO_3@...> wrote:
      >
      > -Hey Hun, I think I can help go to message 1046 it will give the
      > link if you click on it it will take you there Hope you like it It
      > sure gave me hope -- In
      familiesofangelmansyndrome@yahoogroups.com,
      > melissa triplett <melissadtriplett@> wrote:
      > >
      > > I was wondering about the program you all keep talking about
      that
      > come on cnn I went to the cnn .com site but I didn't know what to
      > look for or how to find it I would love to watch I heard about it.
      > >
      > Thanks, Melissa
      > >
      > > monicacarpio_3 <MONICACARPIO_3@> wrote:
      > > Ah and P.S. THe last thing we need is our kids being called
      > mentally
      > > retarded because that is the last thing they are, they know who
      is
      > > who and when they want what and so forth.--- In
      > > familiesofangelmansyndrome@yahoogroups.com, "monicacarpio_3"
      > > <MONICACARPIO_3@> wrote:
      > > >
      > > > Maria what you saying is sooooo true I live in California and
      I
      > go
      > > > through the exact same thing, sometimes I get angry because
      > > instead
      > > > of getting answers I'm answering the questions it really
      sucks,
      > > like
      > > > we don't have enoungh with the "egular poeple" asking "What's
      > > wrong
      > > > with your kid"?-I feel like the doctorsw should get more
      > infromed,
      > > > you know I've thought about doing something crazy, becuase I
      > know
      > > a
      > > > lot of kids have probably gone miss or un-diagnosed, My son
      goes
      > > to
      > > > class with a news anchor here in Fresno and I have seriosly
      > > thought
      > > > of asking him to help me out bring Angelmans Syndrome to the
      > > public
      > > > here in my town. I loved that report on CNN but I know a lot
      of
      > > > poeple either don't have cable or just did'nt watch it. ANY
      > OTHER
      > > > SUGGESTIONS????????
      > > > Monica mom to Angel Crstal -- In
      > > > familiesofangelmansyndrome@yahoogroups.com, "Maria"
      > > > <mleonguerrero06@> wrote:
      > > > >
      > > > > Hello, you know that might or i think it really is true. I
      > live
      > > on
      > > > > Guam, and when Coby was 18 months i was told he "might" have
      > > > cerebal
      > > > > palsy, because he wasn't walking, then at 3 said he is
      showing
      > > > signs
      > > > > of autistic. but i knew it couldn't only be that, but then
      > after
      > > > one
      > > > > look from a specialist he said coby had angelmans. The
      school
      > > > special
      > > > > education still wouldn't take only angelmans as a diagnose
      to
      > > keep
      > > > him
      > > > > in SPED. So they now classify him as mentally retarded. I
      have
      > > > already
      > > > > found four families on Guam who's child has all the symtoms
      as
      > > > coby,
      > > > > but were diagnose as autistic. What i don't understand is,
      how
      > > > come
      > > > > most doctors don't know about angelmans! It seem like i'm a
      > > broken
      > > > > record explaining over and over again "what is Angelman
      > > sydrome".
      > > > But
      > > > > the next visit is the same. "What does he have?" Sorry so
      long
      > > > > everyone, take care and nice chatting.
      > > > > Maria, with angel cobyjake 7.
      > > > >
      > > >
      > >
      > >
      > >
      > >
      > >
      > >
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