Wednesday, September 14, 2011

anencephaly info

As a mom to a child born with anencephaly it’s important to me that there is a site out there that gives honest and helpful information about anencephaly. One of those sites is anencephaly info. Too often there is misinformation out there about anencephaly and sadly many parents never come across the right information. I am so thankful that the creator of this site, Monika Jaquier, has put such a wealth of information together. Monika has been a big advocate for all of us with anencephalic children. If you need any type of information Monika is the person to go to. She’s worked with studies and doctors and has loads of experience in gathering data across the globe about anencephaly. Thank you Monika for all the work you have done!

Along with Carleigh’s story, there are stories of many others. There are resources and information for parents and also pictures of our babies. These pictures are quite important as they show our babies beautifully. Pictures on any search engine are very clinical and don’t represent our babies and how they truly are. In fact, these pictures can be downright frightening for parents with a recent anencephaly diagnosis.

If you are currently carrying a child with anencephaly or know someone who is please send them to this site!! The site can be read in 10 different languages.

http://www.anencephaly.info

8 comments:

tomandcheryl said...

How wonderful of you to be such an advocate...is that the right word? Well, just to help parents going through something so difficult. YOu are an amazing person, holly!
~Cheryl

Tessa said...

Thank you for posting this! I wish I hadn't gone online to search anencephaly after coming home from the doctors office . . . at least not until I had found/been forwarded to anencephalie-info.org. This site helped me so much and continues to do so!!

Sue said...

it's great that there is such a good website for others to go to in their time of need, what a blessing. I just checked, and I already had it listed in my online resources page :-)

Tiffany said...

I agree as well. Thank you for this post. I was one of those frightened mamas when I got my diagnosis back in 2007. Had I found the right site back then I think I would have probably decided to see her and hold her in the hospital when I had her...

Robb S said...

Holly,
Your write up on Monika's site is wonderfully written--your experience is so very similar to my family's with our Charity. I mean really--besides some significant details I felt like I was reading my own story. Thanks for taking the time to spell out the details. And thanks too for your kind comments on Charity's blog.
Robb S

Amy von Oven said...

You really do SO much for others, I think it is AMAZING! Thank you!

Sarita Boyette said...

I'm really glad there is a site like this to educate those who are facing their child's diagnosis and and any other family members & friends who may have questions & would rather have the facts than to just wonder. I'm sure this site has been a blessing to many people.

CynthiaS said...

Love this post! Monika's website is what I came across that helped me make the decision to carry Olivia. What I had found before terrified me, the first was a wikepedia picture. Then I found her sight with beautiful babies and stories of love from the families, it helped show me that it was a wonderful thing to carry Olivia rather than a weird/wrong decision we made. Hope this makes sense, just love her site!

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