Nathaniel :: Child with Spina Bifida

Nathaniel is 11 years old, and was born with Spina Bifida.


I found out at my 16 week ultrasound about the Spina Bifida. Eleven years ago I began I journey that I was TERRIFIED of. Mostly I was terrified because no one had given me any HOPE that my baby would have a good life.

Nathaniel, June 30, 2000: 2 days old
But you know what? They were ALL wrong!

As scared as I was of Spina Bifida, I have since learned it's just a different way of life.

Nathaniel on his first birthday, just hours out of major surgery
But it is still life at its fullest!

Nathaniel, ~18 months old
Little did I know eleven years ago today what an AMAZING child Nathaniel would be.

Take That! Walking on the beach at 3.5 with NO walker. He had JUST graduated from the walker.
Little did I know that he would teach me far more than I could EVER teach him!

The little guy I was told over and over again would not walk.... playing soccer in all of his glory!

Nat doing his FAVORITE thing... surfing! Summer 2011

Many would say that our life is hard. I would counter that we all have a journey that we are on, and many of those journeys are hard, ours is no different. I will be the first to admit that we deal with a LOT, but there is never a promise that we won't deal with a lot in this life. I feel blessed to be dealing with it for such an amazing child!

Nathaniel has had to deal with many things throughout his life that I wouldn't have wished on him, yet each time we go through something we ALL grow stronger and learn from it. Nathaniel is a INTEGRAL part of our family and we love him for being him!

To us, Spina Bifida is a part of our life, but there is SO MUCH MORE to our life than just Spina Bifida! We live for love, for joy and for family, just like anyone else!

Read more about Nathaniel on his family blog: Simply Soares

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Thank you for sharing Nathaniel's story with us Gretchen! We still need stories, please ADD YOURS!

Emm :: Adult with Spina Bifida

I was born in 1934 and was not expected to live for about two weeks. I was always a sickly child but was able to do all the ordinary physical things being SB. For many a year my mother would show my back scar to people until I was about 11yrs old when I then started to object to having my pants pulled down and shown off to all and sundrie.

I never knew the what it was that had occured to me as a baby until I was in my 50s even though I repeatedly asked various doctors but they would not say. Then, after I had done quite a bit of research myself I came across an article on SB and realized that it was what I had.

As far as being able to take part in any sports etc. I was very much limited as I would soon get very bad back pain but on the whole my physical abilities were quite good. I have enjoyed an active life playing badminton, swimming and always enjoyed ballroom dancing too. It is only now in my later years that I have become disabled due to my spinal weakness mainly brought on by old age wear and tear.

Emm is a Mother of 3/gran of 7/ grtg ran of 4, and lives in Norfolk, England.

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Thank you for sharing your story Emm! We still need more stories, click here to share yours!

Grayson :: Child with Spina Bifida

Grayson is 18 months old and has the brightest blue eyes ever! He was blessed to get his daddy's beautiful blue eyes.


Grayson was born with Spina Bifida at L5-S1, but that has never stopped him! He came out fiesty! Before I was even able to get to the NICU to see him, he was already showing the world his fighting personality. He kept trying to roll off his stomach and the nurses said he almost kicked himself over twice! He was so strong, able to lift his head and toss it from side to side. I remember being absolutely amazed when I got to spend a few minutes with him before being wheeled to my room to recover. After surgery they actually had to sedate him more because he kept pulling his iv's out and trying to roll off his stomach again. And he hasn't slowed down since!


To date Grayson hasn't missed a single milestone! Take that Spina Bifida! He rolled at 3 months, sat on his own at 6 months, began 4 point crawling at 9 months, pulling to stand at 10 months, cruising at 11 months, and began taking his first steps with a walker at 12 months. Then at 16 months he took his first independent step and at 17 months he could walk 5-10 feet independently. Now he's 18 months and can walk 10 feet smoothly and even return to standing on his own when he falls. Grayson wears afos because he has very little movement or muscles below the knees. Spina Bifida may be a part of him, but it most definitely does not define him!


Grayson is the most sweet-natured boy I've ever met. He loves giving hugs and kisses, even is a great snuggle bug when he's trying to get out of doing something (usually pt or bedtime). Grayson loves trucks, dinosaurs, and any kind of animal. He loves making animal sounds and can tell you what just about every farm animal says. A truck can't drive by us without him signing the sign for car and saying VROOM! Bath time is his favorite time of day. Just opening the bathroom door gets him all excited and he quickly goes to the bathroom squealing with joy. He loves reading books and climbing anything and everything. Grayson loves going to the park, the slide and the swings are his favorite. He's bit of a dare devil because he loves the big slides that make him go really fast or the curved ones. On the swings he loves being pushed really high, makes me a little nervous but he LOVES it. Grayson's favorite word right now is uh-oh. He says it all the time. He purposely throws things down just so he can say, "Uh-oh"! It's super cute! Grayson has the greatest belly laugh ever. I get so tickled when he finds something super funny. This week it was an Elmo beanie baby that kept falling over every time I sat him up. He got so tickled at this and it was absolutely adorable! I honestly can't believe how lucky we are to have been blessed with him!

my blog is: littlegjourney.blogspot.com

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Thank you for sharing Grayson's story Melisa! We still need more stories, click here to share yours!