Welcome to Ava's Angels! An organization inspired by Ava Steinbach, a pediatric stroke survivor. Our mission is to raise awareness to the public about pediatric strokes and help families with rare diseases related to strokes . We want families to get the best medical care for their child during hospitalization in the acute stages of the diagnosis as well as the best rehabilitation for a lifetime of progress no matter the cost.
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Our Story
Ava Steinbach was a normal, happy, and healthy baby. At the age of 9months she had her first seizure. As a pediatric emergency room nurse, it was the scariest thing I had ever seen! We went to the hospital and were told it was a febrile seizure. I was okay with that. Until two weeks later, she had another, longer seizure. After going yet again to the hospital, we were admitted. Sent home on seizure medication, we had to come to grips with the fact that she had a seizure disorder.
Six months later, December 26, 2007 she got extrememly sick with a respiratory virus and exhibited signs of a stroke. Then the worst news...Ava had "suffered" a stroke. Knowing this, she still lay in a coma state, not opening her eyes. We didn't know if she would "survive" the stroke. The neurologist also told us she had MoyaMoya disease and there was nothing we could do for it because she was so young. That answer was not good enough for us. After only two weeks of research and sending her test results to opposite ends of the country, we found out that she could have surgery to prevent strokes from occurring.
Now, we just had to get her healthy! She was like a 15 month old newborn baby. She had to learn to hold her head, sit up, ect. We were faced with the fact that she would probably have therapy most of her life. But one day at a time. After months at an in patient rehabilitation facilty for children, we were sent home. With a "new" normal life. Six months after her stroke, she had a 10 hour brain surgery performed by Dr. Scott in Boston. A week later we were home.
That brings us to now! Ava is an inspiration to so many people. She is so happy. Her heart is huge! As parents, we wanted to make an otherwise traumatic situation into an opportunity to help others. We have made so many great decisions regarding Ava's care, therapy, etc; we have made some not so great decisions. We are in the process of becoming a non-profit organization so we can help others in similar circumstances financially. Most of all we want people to know that KIDS DO HAVE STROKES!
We hope you will enjoy exploring our site and come back again. We hope to update this site often with pictures and stories of families we have helped.
-Jill Steinbach