About Ava’s Journey

This is a story about one little girl’s journey with a medical condition called craniosynostosis. This is about decisions we made as a family, choices we were faced with as a couple and emotional and physical scars we each carry individually. I hope it will help many other people learn about this big scary word and what it means for 1 in 2000 children born every day throughout the world. I also hope that with awareness, money will be raised…. allowing for more research on surgical outcomes and craniosynostosis causes. There’s no reason people shouldn’t know about this condition – even if they call it ‘cranio something or other’. Sometimes craniosynostosis is referred to as just ‘synostosis’ or ‘cranio’ too. Please feel free to pass along this link. Share it with your friends and family and encourage them to do the same. Thank you for sharing in Ava’s Journey.

48 Responses to About Ava’s Journey

  1. brian Payer says:

    Brian and Melissa…Ava, Melissa and you will have my prayers daily. May the Creator guide this journey for you and I stand beside you each day with whatever strength I have.



  2. Pat Van Roekel says:

    Dear Brian, Melissa and Ava,
    Kari informed me the other day about your ongoing struggle with Ava and her health. I had heard a long time ago that you had a little girl, but nothing since. We as a family are so sorry to hear about your situation and our hearts and prayers go out to you now and for the future. Also it is great that you are helping other families by posting Ava’s journey-take care and stop in to see us if you are near. Take care Pat and family

  3. Jenny Mondor Lindsay says:

    Melissa , my thoughts are with Ava, you and your family. I work as a Neonatel
    ICU nurse and have seen this condition only once. You are in my prayers and thoughts. Hang in there,

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  46. judeclarksdad says:

    Melissa, thank you so much for doing this. My name is Dan and my wife’s name is Jamie. My newborn son, Jude, was born during the holidays just as Ava was. My wife and I have learned that he has Mercedes Benz Syndrome also. It is heartening to read this and see things go so well with your daughter and her operations. We have many decisions to make in the near future. I am in the military and we live overseas so it has been difficult to research hospitals. I hope you can still see these posts because I have a feeling that you might have some good advice for me. Thanks again and I am happy your daughter did so well.

    • Melissa says:

      Hi there Dan – I’ve replied to you via email, so please let me know if you don’t receive it. I’m still checking it and I’m so happy you’ve found it helpful!
      That’s why I keep the website active!
      Talk soon!

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