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Roaring for Rory

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. A few months later, she and her brother, Declan, 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.

Over the past year, Rory has amazed us with her progress. She is learning to use her prosthesis and gait trainer. She has already mastered her big girl wheels.

Please donate today. Every little bit helps.

We’d love for you to join our Team, Roaring for Rory on October 14. The twins are dressing as a monkey and giraffe for Halloween. We want to use that theme for our Team.  We’re appreciative of the people who help us with our little zoo of a crazy life all year round. We will be ordering t-shirts, please let me know if you’d like to purchase one.

Our Team





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