ASK ESMÉ'S MOM

Check out my new vlog project, Ask Esmé's Mom, where I answer questions about raising a child with severe disabilities. Episode 5 is available now, subscribe to the YouTube Channel so you don't miss any future episodes. Do you have a question you want to ask Esmé's Mom? Use this form to submit question.

ABOUT ME

I am Hillary. I’m a lot of things: a PhD, a writer, rare disease community engagement consultant, a non-profit founder, a mixer of oddball cocktails...But most importantly? I am the mom of a ridiculously fun, goofy, determined, and super cute little girl named Esmé. Esmé is my best buddy, my muse, and my teacher. Esmé is also medically-fragile, developmentally-delayed, and a bit of a scientific mystery. Since becoming Esmé's mother I have devoted myself to trying to improve the lives of children like Esmé through storytelling, education, advocacy, and medical research.

Check out the writing and consulting services I offer or scroll down to see examples of my work.

 

MY WORK

Whoosh

Books
Whoosh

Now You See Us, Romper

Select Publications
Now You See Us, Romper

Around and Into The Unknown

Books
Around and Into The Unknown

The Bee’s Knees Cocktail

Cocktails
The Bee’s Knees Cocktail

The Cute Syndrome Foundation

Advocacy and Public Speaking
The Cute Syndrome Foundation

The Industry Sour Cocktail

Cocktails
The Industry Sour Cocktail

SCN8A Mutation Awareness Campaigns

Advocacy and Public Speaking
SCN8A Mutation Awareness Campaigns

Lilac Love

Cocktails
Lilac Love

PRAISE FOR MY WORK

“Written candidly, with unrelenting insight and brutal emotional honesty…While the genetic testing information she provides is surely helpful to others walking the same path, what is far more important is the context into which she places genetic diagnoses, mutations, and labels…Her framing of genetic mutations as the beauty of human diversity is invaluable for other families coping with a genetic diagnosis or undergoing genetic testing.”

Susan Agrawal, Editor Complex Child Magazine – Praise for Around and Into the Unknown

“Hillary Savoie is a thought-provoking storyteller.  Her writing combines raw emotion with scientific intelligence and thoughtful humility.  The unfolding journey of Esmé and Hillary is a fascinating combination of unconditional love and survival at the cutting edge of scientific inquiry.  How do you parent with confidence, empathy and encouragement when there are no solid facts or answers from the medical community?  Ask Hillary.”

 

Carin Bodnar, Author, Wild Sex and Wild Moms

CONTACT ME

If you want to talk about cocktails, my questionable boxing skills, or just tell me abut how adorable my daughter is, I'd be thrilled to hear from you.

Also, if you have questions about articles, speaking engagements, or my consulting services, that's great too! Drop me an email or find me on social media: