Wednesday, October 6, 2010

"Redefining Spina Bifida"

So I have an amazing on line family. I talk about them often with  my "real" family ha,ha. We love watching all of our other little ones grow and accomplish so much!!!! Even though we've never met, this collection of incredible people affect me in a huge way, and have given me a wealth of support and guidance. Our common link is that we all love someone with spina bifida (mostly we are parents but we've had other family and friends visit us as well). We found each other on and its been a HUGE support for me (and hubby) as we navigate the road of Spina Bifida. One of the things that is often talked about on the board is that there is simply not enough awareness about Spina Bifida (I certainly did not know a thing about it before Alex). This is shocking really since Spina Bifida is THE most common disabling birth defect affecting over 1,000 children born every year! Check this out for more information!

So several of my friends are getting the word out in some fabulous ways (October is Spina Bifida month). What do you picture when you hear "Spina Bifida?" Well if you're already following this blog, you probably have a pretty good idea but here's more!

Go here and you can see a blog of our sweet amazing babes, Cassie is featuring a child with Spina Bifida every day this month! Alex was already featured here.

And just as exciting one of our friends Kari came up with an idea of creating a t-shirt to bring more awareness. Together with Leigh and Andy (Grey's parents) they came up with this. Its FABULOUS. I'm going to go place my order! You can too if you are interested! Go here to order yours!!!



Dill Family said...

Great summary! I'm so glad for the internet and being able to "do life" with all the other SB families. It would be such a lonely road otherwise!

Heather said...

So glad to have blogs like yours to know we are not alone in this SB journey. :-)
Heather C.

Jill said...

It IS such an amazing family, isn't it? I love your new header picture! Adorable.

Anonymous said...

Hi Holli. I've been wanting to say hi for a while and this post encouraged me to do so. I do not have a baby with SB, but I do have 26 week twin boys born in October 2009 at 1.9 lbs and 2.1 lbs. I believe I found your blog as I searched for 'premature twin boys' or something close to that. It's helpful to know there are others out there going through similar situations. I also see that you're in Rochester; I am in Buffalo. Anyway, you are a wonderfully positive person and I enjoy reading your updates. Nicholas and Alex are beautiful and seem to be doing so well. I don't have a blog myself; maybe someday! Shannon

Holli (and Mark) said...

Hi shannon,

thank you so much for the message!!! So glad you found us. Would love to hear more about your boys as well. And Buffalo is not far at all. I haven't met many with very premature twins. feel free to email me your address. Would love to chat.