In community, we support, encourage and guide with resources and love.
My name is Julie, and I am the proud mama to three incredible daughters: Amelia, Eliza, and Caroline. When Eliza was born in 2016, landing first in the NICU and then in the special needs world when she was diagnosed with a rare chromosomal condition called Prader-Willi syndrome (PWS), life as I knew it changed forever. And so did I. Her struggles and her triumphs became my rally cry, inviting me to fierce advocacy, meaningful connections, and awestruck wonder. I am nothing but grateful that I get to parent these girls alongside my husband, Derrick, from our home in Anchorage, Alaska.
A LIL About Me
I met Derrick on a ski trip with some mutual friends back in 2008, and he captured my heart that very first night when he dropped us all off at The Goat Soup and Whiskey before unloading everyone’s heavy gear and bags into our shared condo without prompting and without a second thought. He had us laughing all weekend, and his servant’s heart and sense of humor have captivated me ever since. We love nothing more than being outside with our girls, skiing or fishing in the last frontier.
Wife + Girl mom
I have journaled my entire life and have always found writing to be clarifying and healing. I started blogging shortly after Eliza was born initially just to share updates, but it became a helpful tool to process my own experience. Shortly after Eliza was diagnosed, I co-authored a cover story for the medical journal Advances of Neonatal Care, providing insight to doctors and nurses on the parent experience in the NICU, and have since cast the net wider as a contributing writer on the Today Parenting Team and HuffPost, as well as blogs hosted by The Mighty and The Foundation for Prader-Willi Research. I am working on a memoir now, which I hope to publish in the coming year.
Writer
Whether to a group of parents or a group of professionals, I love getting out and connecting with others! I served for three years to advance the parent voice as a faculty member and conference speaker for the Fragile Infant Feeding Institute, which primarily represented medical professionals and therapists in the hospital and early intervention settings, and now serve as a speaker to parents of the newly diagnosed at the annual conference for the Foundation for Prader-Willi Research, as well as to various parent, school, and church groups. If you’re interested in finding out more about topics I address or whether I might be a good fit for your group, contact me here.
Speaker
I fell into my first teaching job when a summer school position needed to be filled. I had no teaching degree, but the state issued me an emergency license, and I fell in love with the job. I went on to become a full-time high school English teacher and went back to school to become a literacy specialist. My favorite students were always the ones who struggled, and I made it my goal to help them recognize their gifts because I know without a doubt that we are all equipped for success when we can recognize and nurture our unique gifts.
Teacher
I am a fierce believer that the needle of change moves best in relationship and through personal stories and encounters. Since Eliza was born, I have made it my mission to offer insight on ways the NICU, hospital, church, and education systems can better serve and celebrate the neurodiverse population and their families. I also co-founded and co-directed one of Denver’s largest turkey trots, raising funds and awareness for Prader-Willi. It is currently on its eight year and has raised hundreds of thousands of dollars for research.
Advocate for change
My dear friend Rachael was the first parent of a child with PWS to come alongside me and offer the perspective, wisdom, and hope I desperately needed. I know firsthand the power of that gift, and I am committed to paying it forward. Being a little further along on the journey allows me to offer the same to parents of the newly diagnosed, and it is a role I treasure. There is such power in community, and I seek to foster that with my one-on-one and small group connections, both in the special needs arena and also through my church as a Bible study leader and MOPS mentor.
Mentor
Let’s get personal
HOMETOWN:
Dallas, Texas
CURRENT TOWN:
Anchorage, Alaska
FAVORITE SHOW RIGHT NOW:
Ted Lasso
MOVIE I COULD WATCH AGAIN & AGAIN:
The Sound of Music
IF I COULD HAVE DINNER WITH ANY FOUR PEOPLE, THEY WOULD BE:
Jesus, Mister Rogers, Jim Henson, and Julie Andrews
LOVE LANGUAGE:
Words of affirmation, closely followed by quality time
ENNEAGRAM #:
9 (I’m a peace maker by nature)
MY PERFECT DAY WOULD INCLUDE:
Being by the ocean with my family, eating chips and salsa, and reading a book I don’t want to end
PERSONAL MANTRA:
We can do hard things
SURE FIRE WAY TO LIFT MY MOOD:
good music and a good quote (I put them up everywhere)
Alison N.
"Thank you for your perspective and experience. It helps me feel like I'm not alone in the struggle."
Paola R.
