Guestbook

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10 Responses to Guestbook

  1. Danielle Merchant says:

    My younger brother Ethan was born with Vein of Galen Malformation. I am writing a research paper in my senior English class and this site was very helpful. Thank you.

    • vogadmin says:

      Thank-you for your comment Danielle. We are so glad this site has been helpful to you. If we can be of any further assistance, please send an email via the contact page on the site.

      Best wishes to you and your family and especially to Ethan.

  2. A.H. says:

    Can you recommend a good review article on the significance of the Vein of Galen as well as a review of Vein of Galen malformations? I am medical student and I am having a hard time knowing where to start my research about Vein of Galen malformations. Thank you. This website is very good.

    • vogadmin says:

      Hi,

      We are not medical professionals that run this site. However we do have access to the knowledge of medical professionals and if you view our useful links section to the right of this page, you may find some of the information you are looking for. You could also try googling for research papers / articles by Dr Alejandro Berenstein or Professor Karel Te Brugge who are widely regarded as two of the leading world experts on VOG malformations. Hope this helps.

      Good luck with your research.

  3. Shana says:

    My nephew was just born with VGM and he is currently in critical condition. We are hoping and praying for a miracle. It was heartwarming to read all the stories.

    • vogadmin says:

      Hi Shana,

      Newborns that present with VGM can be treated very successfully so never give up hope. Our thoughts are with your nephew and of course you and your family. If you need any furhter information, please see our useful links on the right hand side of the page. You do not say where you are located or if your nephew is currently being treated by a specialist in this particular field of medicine. If you need any further assistance from us, please use the contact page to send us a mail and we will try to assist you and point you in the direction of further help.

  4. Jodi says:

    I first have to say thank you for this site as my daughter is five months away from marking a seven year anniversary from her first procedure. This site has been a life saver and we visit frequently. On another note my daughter has been unofficially diagnosed with Oster-Webber-Rendu/HHT. Her father has this genetic disorder and she has three of the characteristics and we hope in the near future to undergo genetic testing. Has anyone else heard of others diagnosed with Vein of Galen also diagnosed with HHT?

    Thank you!

  5. Aleka says:

    Thank you for putting this site together. I’m located in Georgia and my son was born on September 1 after the Vein of Galen Malformation was found during a 36 week ultrasound. He’s now 2 weeks old and had his first surgury at Emory to glue off 4 of the connecting veins about a week ago. His stats change on a daily basis, so it’s good to be able to read about positive family stories of survival. I’m really praying that I will be able to tell a simular story of my little boy.

  6. Loretta Dillow says:

    Glad to see this website still on. I have to admit that it has been a long time since I have visited it. When I first found it, it was a big help to my husband and I. Our daughters story is on this website. Our daughter Jennifer would have been 18 this coming June. We pray for each and every family that has to deal with the vein of galen. Loretta Dillow

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