About This Blog

Callie Marie


Charlotte Grace

Charlotte Grace


After losing our baby girl, Callie Marie, I wanted to start a blog to help me express my feelings of grief and begin to heal.  Callie died after living for 35 hours after birth.  She was a fighter and her strength builds my own.  Our doctors determined that Callie had an underlying genetic disorder called Neonatal Marfan Syndrome that lead to all of her health issues.  On April 18, 2013, we were blessed with her little sister, Charlotte Grace, who brings us much joy and laughter.  Later, on March 23, 2015 our sweet little Lila Faith was born, and she is doted on by everyone.  It is my hope that others who read this who may be going through similar experiences find comfort in knowing that they are not alone.  Please feel free to message me or leave comments.  Thanks for listening.

For more on Callie’s birth story, please click below:
For the story of Charlotte’s birth, please click below:

10 thoughts on “About This Blog

  1. Oh Kristin. My heart breaks for you and John, but I’m overwelmed by your strength, courage and most of all HOPE! I’ve only met you a couple of times (you and your college friends hosted a bridal shower for Lindsey Leisher at my home), but I feel like I know you personally in your struggle to make some sort of sense of Callie’s passing. Please know that you’re surrounded by so much love and support. Keep your faith- it will help you along this difficult journey.

  2. Kristin, my son Danny who has Neonatal Marfan Syndrome I also refer to as “my sunshine” how strange that is, I guess these special and beautiful babies are just that, pure sunshine, I am so touched by your blog, so beautifully written. You are such a brave and wonderful mummy, my heart aches for you and thank you so much for sharing your story, spreading awareness and please know that you are surrounded by love and support in our wonderful Marfan community xxxxxxxx

    • Hi Sarah! It is nice to “meet” you…I shared Danny’s story via Maya’s blog with my friends. I hope that you enjoy the conference this summer and I hope that Danny is doing well. He is so handsome 🙂 Thank you so much for your message!! xoxo, Kristin

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  7. I just ran across your blog today and have read it all day long. You and your family are an inspiration to us all and I will be in much prayer for each of you.

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