About Us

Hi, my name is Harper Mae! I was born twice,....

 For those that don't know Harper, our baby girl was born September 19 2016 with Spina Bifida. Harper's lesion level is T12, and the form of Spina Bifida that Harper has is called Myeloschisis. Myeloschisis Spina Bifida is where the spinal cord fails to close and the nerves are left exposed. Following the diagnosis, in an attempt to provide Harper with the best opportunity of minimizing the effects of Spina Bifida, we underwent fetoscopic surgery at 25 weeks in gestation. Due to fetal surgery Harper has maintained both sensation and movement all the way down to her toes, whereas we were originally advised that she would never feel or move below her belly button. Even though we were able to preserve movement and sensation, Harper's Chiari II malformation was not reversed, and as a result Harper has hydrocephalus. In order to treat her hydrocephalus, Harper has a shunt to ensure that any fluid is properly drained from her brain. 

Disney and spreading joy....