At our 21-week pre-natal appointment for our twins, Spina Bifida entered our lives. We had no idea what to expect for our baby girl, Rory Mae. A few months later, she and her brother, Declan Edward, joined us on October 13, 2014. With two surgeries within the first two weeks of her life for her Myelomeningocele repair and a shunt for her hydrocephalus, we knew we had a fighter on our hands.
A few Spina Bifida facts:
- It is a neural tube defect that occurs when the spinal column does not close completely.
- It is the Number 1 permanently disabling birth defect in the U.S.
- In the U.S. 1 out of every 1300 babies is born with Spina Bifida.
Each case of Spina Bifida is different. We have no idea all of challenges that Rory may face, but what we do know is that we are blessed to have the Spina Bifida Association of Kentucky. SBAK has given us an invaluable resource for information and support.
SBAK helped us tremendously as we faced Rory’s third surgery this summer on her legs to help with her mobility. She just received her first “shoe”, which is an AFO brace. She melts our hearts with her excitement as she progresses.
Please donate today. Every little bit helps.
We’d love for you to join our Team, Kick in for Rory on October 1. The twins are dressing as Lucy and Charlie Brown from Peanuts for Halloween. We want to use that theme for our Team. We’re appreciative of the “gang” of family and friends supporting us in so many ways.
Your favorite character costume is encouraged, or we will be ordering t-shirts.