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951RE: [Parenting Children with Moyamoya] Re: Jennifer

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  • lora beasley
    Feb 19, 2008
    • 0 Attachment
      Do you live in TN? We are about 3 hours from Memphis. We live in northern corner of AL.

      Lora
      To: parentingchildrenwithmoyamoya@yahoogroups.com
      From: jnokes5@...
      Date: Tue, 19 Feb 2008 20:38:09 -0800
      Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer




















      Lora,

      Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com

      website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.



      Best wishes,

      Jennifer



      Hi Jennifer,

      Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.



      Lora



      To: parentingchildrenwithmoyamoya@yahoogroups.com

      From: jnokes5@...

      Date: Tue, 19 Feb 2008 03:00:13 +0000

      Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya



      --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"



      <lorabeas@...> wrote:



      >



      > Does anyone's child have ocular malformations? My daughter has a



      visual



      > defect in each eye. She has optic nerve hypoplasia in her left eye



      > (which I have been told can be associated with MMD). In her right



      eye,



      > she has either a coloboma or morning glory (optic disc anomaly).



      > She also has other conditions other than just the vision.



      >



      > She is still doing well. It has been one month since her last EDAS



      for



      > bilateral MMD.



      >



      > Thanks,



      > Lora



      >



      Lora,



      My daughter, Paige, who is now almost 6 yrs old was diagnosed with



      MMD in early 2006 after suffering a stroke in December of 2005. She



      doesn't have any malformations however she has an optic pathway



      glioma(tumor in her optic nerve) but it was caused by another



      disorder called Neurofibromatosis which she was diagnosed with at



      age 6 months. I have learned alot about MMD since her diagnosis but



      I did not know that it also caused optic malformations. I wish you



      and your family all the best.Your daughter will be in our thoughts



      and prayers.



      Best of luck,



      Jennifer



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