Anonymous Commenter...
Dear Anonymous Commenter on Audrey's Little Piggies,
I have been in search of other people with Grieg's to find more information on this syndrome and how it affects the person long-term. Our geneticist has provided little help because she says that the information available on this syndrome is limited. If you are reading this and are open to questions, please email me through my profile.
And, thank you for commenting. I'm hoping maybe you could help outline a picture for our future so that we can add our own color to it :)
Thank you again, I hope to hear from you soon.
Sincerely,
Stefani Hannon



3 comments:
I hope and pray that they e-mail you SOON!
Oh! I was just thinking about your kiddo today, and checked back to see how your family is doing! I'll e-mail you today!
I'm so sorry that I just noticed this post! I just sent you an e-mail, and would love to share our family's experience with you.
BTW, we have also learned that there is not much luck out there in finding info. No support groups, not much info that isn't highly technical medical speak. I would love the chance to learn what you know, too!
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