What Does Spina Bifida Mean to You? Please tell us how Spina Bifida has impacted your life. Help To Encourage & Educate!


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What Spina Bifida Means To Me...


These are actual parents and children directly affected by Spina Bifida, telling you what Spina Bifida means to them personally......

*Posted by: Nadja de Mey, Mother of a child with Spina Bifida


After having two kids without SB, who would have expected my third child to have a birth defect? I was young and healthy. But the worse thing was that I had no idea of what SB was, and what my future was going to bring.

Living on a small island where SB hardly exists made things even worse, cause not even the doctors could tell me. Now one and a half year later I am an expert in the field. I've educated myself and am starting a SB foundation on our little island, so that the next mother that has a baby with SB, will not have to go through that horrible dark period of not knowing what to expect, and so I can tell them that even though she'll have to go through hard times, it's not all bad. As a matter of fact, the good times make up for the bad by far.

*Posted by: Jaci Rakauskas, Mother of a child with Spina Bifida

Spina Bifida to me means many things. Change: you'll get updated very quickly on many medical terms and tests, and different procedures. Responsibility: you'll now need to keep very good records on your child. You'll need to have frequent doctor's appointments. Advocate: you'll need to stand up for your child and make sure that they're getting the best possible care there is. Also, you want you child cherished, not treated like a number or statistic. Journey: you will have your rough times, but when you see your child do things, that other's take for granted, it makes everything worthwhile. A child with spina bifida definitely alters your life, but you'll love your child enormously and be thankful that you hung in there. I was young and single and I have no regrets.

*Posted by: Grace, born with Spina Bifida

I'm Grace Pascua, 38 years old and living in the Philippines. I am presently working as a Head Teacher in one of the public high schools in Valenzuela. I want to share my story to parents especially to children with spina bifida. I was diagnosed to have spina bifida when I was born. My mom never heard of my case. All she knows about this is, spina bifida is caused by insufficient supply of folic acid .She never elaborated probably because only a few knew about it. I never checked anyway. Her doctor just said that I have a congenital defect and I could never walk. My mom prayed so hard. But I guess our Lord loved us so much that I was spared from being crippled. In no time I started walking at 7 or 8 months. Though I have a deformity in my right leg it never stopped me from achieving my goals. I was able to get a degree and land a teaching job. I can dance the cha cha, go to the malls and do alot of things like most able bodied persons. I hope that parents of children with spina bifida will not lose hope. They should always support and love their children even more.





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