CeCe’s defect was discovered at her 18-week gender ultrasound by a physician after the tech told us all was well with the pregnancy. We were told all the way up until she was 24 weeks in utero that we had the option to abort her. She’s actually part of a national research study that presented its findings one week after she was born and because of her and the other study participants, the standard of care for these patients at birth has drastically changed.

CeCe and those like her, are often wheel-chair bound, have a shunt in their brain, walk with the aid of arm crutches, and cannot use the bathroom the same way you and I can. They are under CONSTANT watch of myriad disciplines of MDs, therapists, counselors LITERALLY from the day they come home from the hospital. CeCe has had 8 surgeries to date, 4 of them brain surgeries, and many of her counterparts have had countless more surgery visits.

Within the SBA of the Carolinas Chapter, our local, volunteer-led efforts for education and support have a grassroots approach, and we are simultaneously a part of a larger, national organization that can accomplish broader goals, like research and advocacy.

It’s rare in our everyday life to find someone who understands what CeCe deals with, and this community that we’ve built through the Spina Bifida Association means a lot to us now, and I believe in the organization’s mission of building a better and brighter future for all those impacted by Spina Bifida into the future.

— Jen Huskey, mom to Cece