Susan Davis of Wake Forest is president of the midstate chapter of the Spina Bifida Association of North Carolina. Her 16-year-old daughter, Megan Davis, has spina bifida.

THE N&O: Please tell me about Megan's diagnosis, when you received it and how she's doing.

SUSAN DAVIS: We were one of the few couples back then who found out before she was born. I was in the sixth month of pregnancy. My obstetrician noted [on ultrasound] that the ventricles in her brain were dilated so they sent me to a specialist to check on it. They found out that she was going to have spina bifida. We were very lucky that we could gather the team of doctors we wanted.

The day Megan was born, she had to have surgery to close her back and was in the hospital for about three weeks. I didn't get to hold her until she was about a month old. She's only had five [operations]. We've been very fortunate, but each operation was hard.

THE N&O: How severe is her disability?

DAVIS: She is paralyzed from the middle of her back down ... so we knew she'd never walk. They said there was a very good chance that she would be mentally disabled. It was a grim report. But she's turned out to be very bright. Her fine motor skills aren't as strong as another person her age, and writing and math are hard for her, but she's doing very well in school. She's on the Student Council, she swims and she used to ride horses. She's in the school chorus and just did a solo at the fall concert. She's a wonderful singer; I'll brag on her a little bit. She's a great kid. We've been very lucky.

THE N&O: What has having a child with spina bifida taught you and your family?

DAVIS: Perseverance, patience. It's been joyful but heartbreaking at times. I feel very fortunate in that she'll try anything, and hopefully, she's been raised to believe that she can do whatever she wants to do. She may do it a little differently, but she'll do whatever she needs to do. I have very high expectations of her.

THE N&O: What kinds of things is the Spina Bifida Association fighting for to help patients and their families?

DAVIS: We're mainly a support group for families who have a child or adult who has spina bifida. Our goal is to give any kind of support that we can to these families. The cost of raising a child with spina bifida is just astronomical. A monthlong hospital stay is not uncommon; you're talking thousands and thousands of dollars, plus wheelchairs, supplies. It just can be devastating financially to a family, and it's never-ending. Spina bifida cannot be cured; it's lifetime. Our local group probably raises $8,000 to $9,000 [a year], which we disburse to the families for help with medical bills. The state group helps us, too.

THE N&O: What should the state of North Carolina be doing to prevent spina bifida and help families who are already affected by it?

DAVIS: The state should fund a spina bifida public-awareness campaign. I would like to see some provision of funds for expenses not covered by insurance, such as equipment and supplies. I also would like to see more state- supported recreational activities. The tax credit we once had should be reinstated.

THE N&O: Folic acid is a preventative measure. Should North Carolina make it available to women of childbearing age?

DAVIS: Oh, yes, the folic acid thing is pretty much on target. I would love to see that [vitamins for all] happen.

THE N&O: What's the best way for everyday folks to help?

DAVIS: Become knowledgeable about spina bifida. Still, to this day, people look at me like, "What are you talking about?" They've never heard of it, yet spina bifida is one of the most prevalent birth defects in our country, and the range is enormous, from very, very mild to very, very severe. A lot of folks, the minute they see a person using a wheelchair, they make assumptions that might not be true. Folks just don't see the whole person.

THE N&O: What's the outlook for Megan's future?

DAVIS: She's the most cheerful kid you'll ever want to meet. She's in high school, and a very social kid. She goes to everything. The other day, she said, "You know, Mom, I don't think I'd want to walk even if I could." Great outlook, isn't it?

Interviewed by Q editor Carole Tanzer Miller