Spina Bifida Support Group

My 1 year old daughter was born with spina bifida and I was looking for a support group and came across this site. I hoping to get advice and support on what my daughter goes through because at some times it is just so confusing and unbearable.

Hi Lisa

My name is Jessica and I'm almost 24 years old living with spina bifida C-1/2. I noticed no one has replied back to you, so I figured I would be the first. It's very nice to meet you!

ProudMomof2--

What kind of spina bifida does your daughter have? I have the most severe kind, myelomeningocele of my C1 and C2 vertabrae. Wanna hear the really weird part? I can walk and talk just fine, I go to school (will start my last semester of college in August), ext., ext. In other words, I'm doing every single thing the doctors once told my parents I would never do.

So keep the faith, friend. Your daughter may end up surprising you!!!

Spinewriter,

My daughter has L3 and L4 and hydrocephalus and meylo. The doctors keep telling me that she will be slow at learning because she has a shunt and all but suprisinly she is not. They also told me that she would never walk, talk, or do anything really, but guess what she is going to be 2 in August and she is talking just fine and is now trying to walk and do a whole lot of other things just like any other soon to be 2 year old would. There are days though that it is very trying and I still cry for her but I just look at her smile and see how happy she is. But there are also days that I just wish I has someone to talk to that knew where I was coming from and that can understand the frustrations and the aggravations first hand. (If that makes sense). I am glad that you are doing so well for yourself and I want to Thank You for responding because you just gave me a little more hope for my little Mercedes. And please stay in touch.

Lisa2010,

I am new to this thing too. Actually I pretty much gave up on it last year when I seen that noone responded. But I still have some figuring out on this site to do as well.LOL I really appreciate the fact that you are willing to help with advice as well. Please stay in touch.

Proudmomof2,

Sorry; I didn't see your response until just now when I logged on. Glad to hear Mercedes is doing so well! I'd imagine taking care of any child is a big responsibility, but the responsibilities intensify when one takes care of a different-needs child. Way to go, Mama!!!

Oh, and I hope to stay in touch, too. Will try to visit this website more often!

HI ladies- so glad to see you both on this site. I'm Lisa (also) and am the group leader as of only a few months ago. I also work as the Director of the National Resource Center at the SBA. So I am so glad to meet you both. Am trying to steer people toward the group as often as I can. Maybe we'll get some discussion going now! Best, Lisa