Julianna: J is smart, opinionated and kind. She thinks everything looks better embellished and is happy almost all of the time. She dislikes conflict and messy hair. Her middle name is Yuri.
Alex: A is J’s big brother by two years. He dreams of becoming an American Ninja Warrior. He learned to read by going through the entire canon of Calvin and Hobbes. He is my sweet and sensitive boy.
Steve: My husband, and simply the most decent human being I know. He sacrificed a career he loved to become J’s main caregiver. He is patient, calm and can fix just about anything. He is my rock star.
Me: wife, mother, neurologist and Cardinals fan. Recipient of many blessings.
Homie: My mom. Alex started calling her this because he couldn’t pronounce the Korean word for grandmother, 할머니 (“halmoni”). She lives in the midwest but visits frequently. According to Alex, her hobby is “cooking and making people eat more and more food.”
Grandma and Grandpa: Steve’s parents. They moved into a house about five minutes away from us, and are one of the main reasons we have been able to survive as a family. They are salt of the earth and terrifically skilled.
George: our pup, disguised in a cat’s body. He just wants to be loved.
The disease: Julianna has Charcot-Marie-Tooth, a hereditary neuropathy. She has an extremely severe form. Her disease looks more like SMA (spinal muscular atrophy), a motor neuron disease that can look like ALS (Lou Gehrig’s disease) – but in a child or even infant. Learn more about her diagnosis here.