Care for Colbie

“But I can see clear, when looking at the mirror,
saying God made me just right. “

– “I Love Me” by Meghan Trainor (Colbie’s favorite song)

  • Blessed, Not Balanced
    I am so blessed, but I also I believe it’s okay to say “it’s hard” and still be grateful and acknowledge that.  I’ve learned a lot in less than a year since Colbie’s diagnosis. A lot about genetics, rare diseases, disabilities, therapies, neurology, insurance, etc. More than I ever thought I would need to. Honestly,Continue reading “Blessed, Not Balanced”
  • My Colbie Lies Over The Ocean
    When Colbie was an infant all 6 of us would sing our own rendition of “My Bonnie Lies Over the Ocean” with Colbie’s name inserted. “Bring back, bring back, oh bring back my Colbie to me, to me…” It was simple and fun, but I can’t sing this song anymore without getting teary eyed. WhoContinue reading “My Colbie Lies Over The Ocean”
  • One(ish) in a Billion
    The other day, another KIF1A mom and me texted back and forth about everything from the pathetic current condition of our hair to the fact that our children may never walk. These jumps in conversation are normal for us. For the past few months, we have shared so many concerns, reached out for random advice,Continue reading “One(ish) in a Billion”

About Colbie

Our Girl

Born in April of 2019, Colbie has been the brightest of lights in all of our lives. She is happy, determined and keeps us all smiling and laughing often. Colbie LOVES music, water, and everything possible about being outside. Most of all she adores her 4 older siblings and they feel the same way about her. We hope Care for Colbie helps raise awareness & funding for Kif1A research, helps other parents, but also this is just a place for us to keep our friends and family updated as we face whatever is to come for our sweet girl. We will NEVER stop cheering her on.

Have questions, suggestions, or want to help share our story? Please email!

Random videos featuring Colbie and our family: Our Beautiful Mess on Youtube


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