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!

June 2, 2018 - 4:51 pm

Leah - My son and daughter are going to be 4 in December. Both of them are going to start school for the first time September of 2019. I’m nervous and excited at the same time. We are going to the first meeting next week to discuss his disability and what he is predicted to need as well. I have fully prepared for the meeting by conducting research online and talking to other parents of SB children. From that I have sat down at my computer and typed up a list of questions to ask at the meeting. I also emailed everyone a copy of my list of questions and printed out a copy just in case.

What other questions should I ask at the meeting? If I think of any other questions I will add it to my list of questions to ask at the meeting.

May 7, 2020 - 7:52 am

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!

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.

June 2, 2020 - 12:29 pm - Why do some people have good lives and others don’t? I am a realist so I don’t believe in any supernatural stuff and I don’t have confidence in any religious beliefs.
You could call me a hardcore Atheist/Skeptic.
What I sometimes wonder is the reason why do certain folks have
it so excellent in life while others don’t? The only realistic description I could think of is
normally: 1. Random Luck (lucky… show more A few of it is
circumstances of birth and host to birth other is free will and what you perform to overcome any handicaps you may have been born with.
Appear at Hawkins who was simply stricken with a horrible
disease but became an excellent impact on the 20th hundred years thinking and in to
the 21st C and FDR who was struck down with polio but continued to become a great president and player on the
globe stage.

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