Spina Bifida and Hydrocephalus – Never give up hope!

Today is World Spina Bifida and Hydrocephalus Day and I had to share with you an inspirational story about my little friend Noah.

My little friend is only 8 months old, but one of the bravest, wonderful, cheeky and funny little friends I have. Noah is a little miracle and you can read more about his story here.

Due to only having a tiny piece of brain and servere Spina Bifida and hydrocephalus, Doctors told them they would not resuscitate Noah if he wasn’t able to breathe on his own when born. They also said they would not close the Spina Bifida, as the opening was too large.

That large Spina Bifida wound that started like this…

Now looks like this…

Isn’t Noah amazing? Isn’t he a brave and strong little boy? I think so.

When Noah was born doctors said it was likely he would not be able to survive for very long and so his mum and Dad prepared themselves for the worst. You can read more about that here.

Doctors said even if by some miracle he did survive birth and breathe on his own that he would never move, never feed, never eat solids, smile, talk, reach, roll, crawl or walk.

So today on World Spina Bifida and Hydrocephalus Day with very special thanks to his family, I’d like to share this with you….

Noah at 8 months old crawling in his own little way. It’s not your average baby crawl, but then Noah is no average little boy – he’s a little super-star that likes to prove doctors, specialists, consultants and nurses wrong!

To mark World Spina Bifida and Hydrocephalus Day today, the national charity Shine, which represents 10,000 people with spina bifida and hydrocephalus, is calling on the Government to acknowledge the existence of a group of people who are the first to grow old with these disabilities.

Thousands of babies with spina bifida who were born in the last century, and expected to die before they grew up, are being sold short as adults because they have lived too long, according to a national charity. You can read more about that here. 

Noah and his family have taught me so much over the past year, but in particular – that when there is no hope, you still keep hoping.

When you are scared and worried and have nothing left to cling to, you fight for what you believe in and you never stop fighting and hoping.

You never give up.

Thanks to Shelly, Rob, Stephy, Ally and Noah for letting me share private photo’s and videos with you all and for sharing Noah’s story.

*©Shellybobbins2012 All images and videos are the property of Family Bobbins.*