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Re: [Myotubular_Myopathy] Regan & Marconi

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  • ANN MILLER
    Glad to hear the boys are doing good. When we got a diagnosis on Kyle, the only thing the doctors said was we should have the mother, sister, aunts, grand-
    Message 1 of 2 , Aug 1 5:47 PM
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      Glad to hear the boys are doing good.   
       
      When we got a diagnosis on Kyle, the only thing the doctors
      said was we should have the mother, sister, aunts, grand-
      mother, etc tested.  It was not required that they have it
      done.  We are not going to have his sister tested until she
      is older and wants to know if she is a carrier.  We know it is
      in the family.  If we had her tested now we would have to pay
      for the test.  Most insurance companies will not pay for it
      unless you are pregnant.  Kyle's aunt had it done after she
      became pregnant, then her insurance paid for it.    Hope this
      has helped you.
       
      Take care,
       
      Darlene
      ----- Original Message -----
      From: Maurizio
      Sent: Friday, July 29, 2005 10:15 AM
      Subject: [Myotubular_Myopathy] Regan & Marconi

      Hi all, this is just to update you all on Regan & Marconi.

      They are both doing very well, we are in the process of getting
      Regan into school now, he will start in January 2006, we are getting
      him into a mainstream school that do's cater for children with
      special needs, this is handy as its only round the corner from our
      home.

      Marconi is also doing really well, he is now taking solids, he loves
      chocolate and ice-cream, he has even started to roll over onto his
      belly now, he needs a bit of help because his arm gets stuck under
      him and we have to pull it out for him.

      We are still awaiting a diagnosis. I think we will have one quite
      soon, but I'm not sure as things seem to be taking for ever, we have
      received a letter from the clinic of genetics, but all that said was
      that we are on a waiting list and it will take up to 18 weeks before
      we are seen, what this means I just don't know, is it about genetic
      counselling? Or have the results of the DNA tests come back and they
      want to tell us in person at this appointment? I cant see it having
      anything to do with genetic counselling because they cant give us
      counselling until they know for sure what the condition is, anyway I
      think I will just ring them and see what its all about.

      What I need to know from you all is this, how long after you get a
      diagnosis do the doctors start testing other family members like
      sisters, mothers, aunts etc?

      Thank you all, and hope all your boys are well.

      Moz & Rachel




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