Monthly Archives: October 2015

Why my child doesn’t suffer from spina bifida

Recently the media shared a story of the Pope blessing a teenager with spina bifida. Seeing the gesture was touching but a short time later when shared by the media I was saddened to see the headlines read, “Touching moment Pope Francis blesses girl, 17, in a wheelchair who is suffering from spina bifida and […]

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October 22, 2015 - 11:41 am

Taryn Kim Westover - Thank you so much for this post! I too am living with Spina Bifida.
I was born with it in 1955 back when doctors didn’t know much about it at all. I had surgery to close up my spine when I was 5 days old. The doctors didn’t talk about the challenges we would face because they didn’t expect me to live. The only encouragement they gave my parents was that at the most I MIGHT live to see my 18th birthday.
Well, the Lord Willing, 12 days from now I will celebrate my 60th birthday AND what I call my 42 year miracle. I have lived 42 years longer than the doctors said I would.
I also have only had the one surgery at 5 days old. All other surgeries I have had have not been related to the Spina Bifida.
I get around in a motorized wheelchair and have had the blessing and privilege of traveling more places and seeing more things than most people on two good legs!
My main challenge is people who don’t understand my capabilities and who don’t understand disabled people and what they need in the way of accommodations/accessibility.
Thank you again for this post!

October 22, 2015 - 11:53 pm

Melissa Cork - Best article ever. I’m 32 years old (from Australia). I always cringe when people think you ‘suffer’ from Spina Bifida. People always want to feel sorry for you. But why? We are who we are. Well done a great article. Thank you for sharing your story.

October 26, 2015 - 11:56 pm

Kristy - I love your attitude. My son has a couple of medical conditions and I think it is so important to share photos and information so everyone can better understand that life is not your diagnosis.

October 30, 2015 - 8:35 pm

Rudy Bazan - Una de mis mellizas vive con espina bífida, es increíble su fortaleza, nos transmite su alegría por la vida. Acaban de cumplir su primer año de vida.

November 23, 2015 - 4:07 pm

Juan Esteban Salas - A great inspirational site! Not just for the amazing photos , but also for the spirit within your words! Your story is an example of what living with spina bifida must be, both for the people with the condition and their families.

I’m a pediatric neurosurgeon who treats fetal and neonatal patients with spina bifida in Colombia, and let me tell you this: you taught me something that can’t be learned from a medical book, and from now, my patients will never “suffer” from spina bifida. THANK YOU!

2015 Spina Bifida Awareness Campaign

“Hardship often prepares an ordinary person for an extraordinary destiny.” ~C.S. Lewis Just over five years ago we learned our son Chance would be born with spina bifida. We were told then that he would be born with complications that would require a lifetime of care – and that so much would be unknown until […]

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October 8, 2015 - 3:14 am

Deborah Paul - You have outdone yourself again!
The banners are beautiful and truly from the heart!
Amazing!!

October 10, 2015 - 4:52 pm

Brandi Harris - I have 13 year old twins girls, one of them was born with Spina Bifida. The doctors tried to persuade us to cut off her life line due to her birth defects, she wouldn’t be able to do much. God gave us these special girls for a reason. We absolutely can’t imagine our life without her. She is such. Blessing to everyone e she meets with her huge smile and loving personality.

October 21, 2015 - 12:24 am

Marcia Walker - Please send me the link to donate.

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