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Ava Johnson[1].jpg
Diagnosed at age 3 months

Spinal Muscular Atrophy
Ava Johnson

When Ava was born, she was perfectly healthy. After about three months, I started to notice that Ava was not progressing along as she should. She wasn't moving her legs at all and she wouldn't lift her head up if I placed her on her tummy. At Ava's fourth month check up I mentioned it to her Doctor and they decided to run some tests. After x-rays, MRI's, and a muscle biopsy we were told that we would have to wait almost two months for the test results to come back. Finally, when Ava reached 7 months old, we went to see our local neurologist and were told that Ava had Spinal Muscular Atrophy Type 1. She would never be able to sit up on her own, crawl or walk. We were also told that she would have problems eating and would suffer from respiratory problems. The doctor told us to take Ava home and let her die. We were devastated. I wasn't ready to give up on our daughter yet. Since Mobile did not seem to know much about SMA, I did some research and decided to bring Ava to Children's Hospital in Birmingham. When we first made the trip, the doctor that we saw was very informative and wanted to do everything he could for Ava. He set up for her to be in the MD clinic. We met with a team of wonderful doctors, nurses, therapists, and staff who all wanted to do what was best for Ava. The original doctor gave us a year for Ava to live, but now she is almost two years old! Thank you Children's Hospital! Your care and compassion has made a big difference in Ava's and our families lives!

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