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3326Re: [Myotubular_Myopathy] Update

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    Aug 30, 2006
      Hi Betsy and Scott,
      My Kyle will be "5" years old in December.  You can read more on him
      at www.caringbridge.org/md/kylespage   Looking forward to hearing
      more on your Kyle.  I will send you more information on the
      teleconference as soon as I get all the details.  It sounds to be
      very interesting.
      Take care,
      ----- Original Message -----
      Sent: Tuesday, August 29, 2006 12:19 PM
      Subject: Re: [Myotubular_Myopathy] Update

      Dear Darlene,
      It sounds like you have your hands full. I'm new so I don't know your whole story. Our 9-yr-old's name is Kyle, too. We would be very interested to hear about the teleconference also.
      all the best

      On 8/29/06, Darlene <dm4462@...> wrote:

      Hi All,

      Sorry, I haven't written sooner. Welcome to all the new comers.
      Things have been very crazy around here with school starting. Kyle
      and Kayla are both in school now. We have a new nurse!!!!! Kyle
      has done very well lately. He is getting stronger each day and his
      speech is also improving. Connor is also getting stronger. He has
      the cutest smile!!! It's hard to believe Connor will be ONE year
      old in October. Krystal is pregnant again. We don't know yet if it
      is a girl or boy. We are hoping for a girl this time. Kayla wants
      a sister to play with since she has two brothers already. I've been
      emailing back and forth with Alison Frase from the Joshua Foundation
      lately and she was telling me about an up coming teleconference with
      Dr. Beggs on Sept. 17th. Thought this would be of interest to all,
      especially Jacqueline. As soon as I have all the info, will let you
      know. Well got to go get Kyle ready for school. Hope all is well
      with everyone.

      Take care,

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