Sami
This is the English version, you find the original version below
We are the Johnson-Miller family
Hello!
We are the Johnson-Miller family. My name is Stephanie, my husband is Nathan, and we have our daughter Sami (14 years old), and our son Cole (6 years old). Sami also has her biological dad Ian and step-mom Laramie. We’re one big happy family.
Sami is our Salla kid and she’s known for her sweet nature and social charm. Her nickname is Sami Sunshine because she is like a ray of sunshine who spreads warmth, joy, and light with her infectious smile and loving behavior. Sami loves to give hugs and blows kisses to everyone, including strangers. Without using words, she has a unique ability to bring people together.
Sami was a happy and healthy baby. When she was 1, we noticed she was not meeting some of her milestones. Her primary doctor told us that some babies develop a little slower and not to worry about it. A few months went by and we pushed for some testing. Sami had an MRI and was diagnosed with Agenesis of the Corpus Callosum. She had multiple genetic tests at that time as well. We were told that it was unlikely that the ACC would be present without an additional diagnosis.
It wasn’t until September of 2022 that her primary doctor suggested additional genetic testing. The genetic testing we had done in the past was all singular testing. Insurance would not cover a complete panel test. Insurance recently started covering the whole exome sequencing genetic test, and that is how we received her Salla diagnosis. 13 years later!
We are so happy to finally have answers, and to have found this wonderful supportive group of parents. And the board of brilliant doctors and researchers. We are so hopeful and happy to be here.
