Ivy'anna's story

Our next feature, Ivy’anna was born at 39 weeks. Ivy'anna was sent to Scottish Rite Hospital to have her surgery immediately after birth; she has Myelomeningocele and Clubfeet. She received her VP Shunt 5 days after being born and had to stay in the hospital for two weeks. Ivy’anna has had a total of 7 surgeries since birth. She has feeling everywhere but her feet and wears braces to support her walking. Nevertheless, she does pretty well getting around.

Her family documents Ivy'anna's excursions on their Instagram account:  @ivy_on_wheels.
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Read a detailed Q+A from the family below:

What are some of Ivy’anna’s favorite activities?
Ivy’anna loves to dance, sing, and play tag with her friends at school. She’s a really silly and loving little girl.

What’s been the biggest challenge and biggest reward with spina bifida so far?
The biggest challenge with Spina Bifida has been the bowel and bladder issues. She has to get catheterized every 4 hrs, and she takes different medicines for the bowels as well. Due to her being 10, I’m in the process of teaching her how to self-cath. The biggest reward is watching her overcome obstacles every day. She’s actually in a running club, and watching her go is so amazing. 

What advice would you give to other parents or families who receive a similar diagnosis?
For parents that might get this diagnosis in the future, I would say keep your head up and never give up; God has the last say so. According to the doctors, Ivyanna wasn’t supposed to be able to walk, let alone run. Also, she is supposed to be paralyzed from the waist down, and she can feel her legs just fine. Keep faith and don’t give up on your child. It’s not Spina Bifida; it’s Spina Beautiful because these babies are beautiful inside and out.

What do you want the world to know about Ivy’anna?
I want the world to know that Ivy’anna is a smart and loving 10-year-old with a promising future. She doesn’t let her disability define her. She’s in running club and music and loves to dance! Ivy’anna has a smile that can light up a house. She’s unique and funny and a real pleasure to meet.
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It's not Spina Bifida; it's Spina Beautiful because these babies are beautiful inside and out.

Visit: @ivy_on_wheels to support her page.