Chosen for This? Special Needs, Seizures, and Keto
Living with HUWE1 with Elizabeth Coulter
Today's guest, Elizabeth is mother to 4 very young children. Her oldest, Louie, was born with a genetic condition so rare that he was only the 12th person in the world diagnosed with it. Not only that, but the mutation was "De Novo" - Latin for "in the beginning", meaning that this genetic disorder did not come Elizabeth and her husband’s genes; it was a mutation that sprang up in Louie, out of nothing, it would seem.
When Louie was 5, just as Elizabeth was hitting her stride as a special needs mom, an added difficulty arrived also seemingly "de novo", from nowhere, literally overnight. One evening, they all went to bed and woke up at midnight because Louie was having a seizure. Then he had another, and another, and another, all in the space of just a few hours. Since then, Louie has had dozens - sometimes even 40 or 50 seizures daily. Every day, until, surprisingly doctors suggested the Keto diet,which has given Louie some (although not complete) relief, at least temporarily.
But in the midst of all this talk about De Novo, out of nowhere, and overnight - Elizabeth does not believe that there was anything De Novo about the turns her life has taken. She believes, quite strongly, as you'll hear, that God actually chose her for this and gave her everything she needed - from her Puerto Rican heritage, the words of her wise Abuela, strong family support from both sides - Puerto Rican and German - and the faith to do everything she can to make life for not only Louie, but also many others like him, better. She has started a non-profit called Louie's HUWE with the goal of connecting, serving, and supporting other families like hers and raising money to funding research into ways to improve quality of life for kids like Louie.
Today, Elizabeth is sharing so many personal & really intimate stories with us, from memories of her Abuela's Pollo Frito to the moment of Louie's birth. I’m so glad to have her on and so glad you’re here to join us.
* Pollo Frito
* Elizabeth's Puerto Rican & German heritage
* Being blindsided with Louie's diagnosis
* Louie's love of circles: "Find a man who loves you like Louie looks at circles"
* Seizures: Going from zero to 50/60 a day, in one night
* Seizures: The KETO Diet and how it helps
* The Great Facebok purge that every Special Needs Mom goes through
* The key to being a good friend to a special needs mom
* Special needs siblings
* Sleep as a mother when your child is having dozens of seizures a day
* The dangers of a high fat diet in a child
* What Elizabeth has learned: "Everybody has something"
* Louie's HUWE - the Research Foundation Elizabeth has started
* Special needs & faith: "This is God's way of bringing people together"
* Special needs, faith & Encanto
* How to help Elizabeth, Louie, and other HUWE families
* Learning to ask for help
Also listen on:
How To Connect with Elizabeth or the Louie's HUWE1 Foundation
Support Louie's HUWE1 by Ordering Local Flowers
This Episode's Storied Recipe
The perfect Pollo Frito begins with marinating the chicken! Then fry for a perfect finish. SO delicious & flavorful!!
Pin This Episode
More About The Storied Recipe Podcast
I am also a storytelling photographer celebrating food in extraordinary light
Please Rate or Review The Podcast
The Storied Recipe is more than a podcast. It is a community of curious, thoughtful individuals that love food, culture, and people. I depend on the community for feedback and the growth of the podcast. If you enjoyed this episode, would you please consider sending it to a friend or family member?
Also, every review helps new listeners find the podcast. They mean so, so much to me personally. With all the different devices and podcast players out there, it can be a little tricky to figure out how to figure out how to leave one. If you click on this link, it will automatically detect your device and show you how to easily leave a review!! Thanks so much! lovethepodcast.com/thestoriedrecipe.
The Storied Recipe Podcast
Get Recipe and Episode Updates Every Friday: Subscribe to the newsletter
The Storied Recipe on Instagram: @thestoriedrecipe.podcast
The Storied Recipe on Pinterest: @thestoriedrecipe.com