On February 14, 2016 we welcomed a sweet baby girl named Lindsey to our family. Immediately after she was born, the Neonatologist noticed a hole on her lower back and diagnosed her with Myelomeningocele. This was a new word to us and the "unknowns" were among the words repeated over and over again. Myelomeningocele is the most severe form of Spina Bifida an individual can have. We spent 21 long days in the NICU at Nationwide Children's Hospital in Columbus, where she had her back repaired, multiple ultrasounds, MRIs, urology testing, and various other testing. A month later, we returned for shunt placement (a device placed in the head to help disperse spinal fluid into the body).
On February 14, 2017 we became a 501(c)(3) recognized nonprofit organization in the state of Ohio. It is our mission to spread Spina Bifida awareness in the Greater Cleveland area and throughout Ohio.
Our main focus is to provide new and expectant parents with support from someone who has been in those shoes and have faced those scary unknowns (we still do!) as well as connect those families with other resources as needed. We provide assistance to individuals with Spina Bifida and their caretakers by supporting their needs through empowerment and education. We also work to raise awareness and educate others throughout the state as well as advocate for the Spina Bifida community.
If you would like more information please contact us today.