hello My name is JoAnna Rakestraw and my daughter Avva Love has - TopicsExpress

hello My name is JoAnna Rakestraw and my daughter Avva Love has just been diagnosed with the ACTA2 179 disorder. She is 4 years old and an amazing little girl!! She had a PDA repair at 6 months old along with an aortic repair at the same time. She has pulmanary hypertention, large pupils, hydronyphrosis, and just had a mild stoke. we were told that there is not much information out there on this disorder and the doctors could not give us many answers. I decided to reach out and find other people that have the same story. thank you!!

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