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Michael Walker – We went in for the routine ultrasound at 27 weeks and as
the nurse was looking at the ultrasound she said, “now wait a minute, I see something”.
Nancy Walker - And I asked her, is it something that you can tell us?
And she said there is something wrong and at that point everything just stopped.
And then you sort of get into the normalcy that is your life
and you love that baby and you treat her just like another member of the family.
With Sophie she has a little bit of extra care that we need to take.
But other than that she really is just like any other kid.
Michael Walker– The only difference is she’s exceptionally cute. That’s a problem.
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Alvin Francis - Eric comes home and says, I can jump, and we all kind of go
no you can’t. And then he shows you that he can and, you realize that
the limitations that we set are those that we know
but because he has not known any different, he hasn’t set any limitations.
Eric Francis – I like doing karate and exercising so I can get strong.
Milele Francis - Eric knows he has spina bifida. He knows why he wears braces.
He knows he’s had surgeries. Explaining to your children what’s going on and why
is important too because there’s always going to be questions.
Eric Francis - I don’t let anything stop me from kicking or punching.
Milele Francis - And so I think that not so much having a child with spina bifida
changed my life, but being a parent changed my life.
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Hi, I’m Joshua Joines and I’m an 11 year old and I have Spina Bifida.
I think I’m just a normal kid but, there’s obviously some differences.
I go to the hospital a lot more than everybody else and I have to wear leg braces and stuff like that.
Angie Joines - We’ve encouraged Joshua’s independence,
since he came home from the hospital. We started him with physical therapy at six weeks of age;
his physical therapist adapted all of his toys. We taught him things like swimming
when he was 3 and riding a bike when he was 3. Joshua has a huge part in his own
medical care. We put together a medical notebook.
For each specialist, there’s a category and Joshua has a page,
and before every appointment he’s required to write his own questions to the physician.
In the school setting, he has been self-catheterizing since he was 3 years old.
When we sent him to preschool at four, he went with a three-alarm watch
and a bag of catheter supplies, and we gave him the confidence that he could do it.
Josh Joines - I like being part of my medical team because they listen to me better than my parents.
Angie Joines - From the very beginning we always thought that this spina bifida
was just something on the side. We never allowed the spina bifida to come first.
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My name is, Ramu Mundakizhi Kaledi
and I’m a Health Policy Analyst at the CDC.
I graduated from Georgia State University, with a bachelor’s in public policy.
My parents, especially my dad, pushed me to do things,
just to lead a normal life. If I felt like
I couldn’t do something he would push me.
Everyone has to learn to be independent and living on their own,
managing their own lives, I’m beginning to do that as well now.
I go to my own doctor’s appointments and manage all my doctor visits and my medical issues.
I play actually on a wheelchair league and, because it’s a wheelchair league,
it’s a small league and it’s all about the community.
If I could give a young person one major bit of advice,
have dreams in life and, stick to those dreams.
Everyone has adversities in life and your adversities
although different from others aren’t going to keep you from accomplishing your dreams.
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