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Monday, November 7, 2011

Our Spina Bifida Walk-N-Roll

First off, I want to say THANK YOU to everyone who donated and participated in our walk-and-roll for Spina Bifida.  I know Madi felt very special being surrounded by those those that love her.  Team Madi raised over $500 for the local chapter and we are so grateful for each and every one of you that donated!

Secondly, I want to say a bit about what I noticed at the walk.  Too often, I talk to moms who just found out their baby has spina bifida and they were told by their doctor that their child would have no quality of life.  It's absurd, absolutely absurd.  When I looked around at the walk-and-roll, I was taken back at all of the life I saw.  These kiddos were not just going through the motions.  They had a twinkle in their eye and they were genuinely happy.  They were full of smiles and laughs.  Their leg braces and wheelchairs didn't slow them down one bit.  They had a true love for life and they were inspiring to watch.  I am not saying spina bifida is always a walk in the park, nor am I saying that every person or child with spina bifida loves every little part of their life (who does!), but what I am saying is that these kiddos have an amazing spirit and love for life.  If you asked them, they would not tell you they had no quality of life, but instead, that they loved life!

We decided to deck out Madi's chair and it was a lot of fun!  I think we're going to make it a tradition and decorate it every season.  It sounds like a great tradition!

Here are some photos from the day...

From left to right: David (dad), Umpa (great-grandpa), Conner (brother), Uma (great-grandma), Madi (the little star) Papa (grandpa), Grams (grandma), Nathan (cousin), Jamie (mom), Kim (aunt), Grammy (grandma)

Taking a little break to run up the mountain

I did it!

This is own, Madi's friend.  They were showing off the rainbows on their arms.  Owen showed Madi how to pop wheelies at the last Spina Bifida Association party in December.

Madi's cousin, Nathan

Madi's great-grandma, Uma

Madi's buddy, Ezra

Dancing :)

It was a great day!!!


ainemc said...

looks like that was a fun day out! well done to you all :)

Colleen said...

You all looked so cute!

Anonymous said...

Hello Jamie,

I wanted to stop by to let you know that on November 30th, 2011 at 7pm Dr. Marc Levitt, Director of The Cincinnati Colorectal Center for Children, will be holding an online Q & A relating to fecal incontinence due to Spina Bifida, as well as, explaining the Bowel Management Program he has designed to battle this difficult problem. The RSVP page is posted below if you are interested in logging on and attending and please feel free to contact me with any questions you may have concerning the event. Hope all is well and I hope you find this resource helpful on your journey!



John Martin
Partner's Hub

Unknown said...

do theu have these in illinois and how do I do a walk n roll our fundraiser

Jamie said...

It looks like they do! Here's their site... Here is the info on the next event: •September 22: 16th Annual Memorial Walk-and-Roll-a-Thon, Bloomington