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Published on January 18, 2024

Spina Bifida Patient Harper Excels as Disability Advocate

Spina Bifida Patient Harper Excels as Disability Advocate

"Harper was born with spina bifida, a neural tube defect that occurs when the baby’s spine doesn’t close during pregnancy. We learned about her condition before she was born, so we were able to tour the NICU and meet some of the doctors who would be caring for her. She was born in July 2008 and spent 28 days at ETCH. She had two surgeries during that first month. After we went home, Harper continued to receive care from many ETCH docs and therapists until we moved from the area when she was in kindergarten.

Harper is now 15 and has achieved so much. She is a leader at her high school, participating in theater productions and mental health advocacy initiatives. She is a disability advocate who was named national runner up at the 2023 Miss Amazing Disability Advocacy Pageant, and she petitioned our state’s governor to recognize October as Spina Bifida Month. Harper also writes a blog to educate others about living with a disability and is just an all-around good kid.

We truly believe the care she received at ETCH in her very early days was instrumental in helping her become the person she is today. As she starts making plans for college, we will be forever grateful to the ETCH team who provided such excellent care and guidance.

-- Harper's Mom, Chelsea

Spina Bifida Patient Harper Excels as Disability Advocate Spina Bifida Patient Harper Excels as Disability Advocate Spina Bifida Patient Harper Excels as Disability Advocate Spina Bifida Patient Harper Excels as Disability Advocate