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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