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)
- 2 Years and the Race Against TimeWow, two years of (knowing about) KAND. Colbie is all of a sudden 3 1/2 years old. She isn’t one of the babies of the KIF1A group anymore. New little ones have been diagnosed at an even younger age than she was and older children and adults have received this difficult diagnosis since then too.Continue reading “2 Years and the Race Against Time”
- Dear Diagnosis, It’s been a year.Dear Diagnosis, …it’s been a year. I’d love for this to be a parting letter, but unfortunately we are stuck with you. So, instead I’ll reflect on our year together as much as I can. And I say our, because you have affected all of us in some way. I’ve felt this day approaching forContinue reading “Dear Diagnosis, It’s been a year.”
- Blessed, Not BalancedI 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”
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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