episode 137
Chosen for This? Special Needs, Seizures, and Keto
Living with HUWE1 with Elizabeth Coulter
Introduction
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.
Highlights
* 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
Listen Now
Also listen on:
How To Connect with Elizabeth or the Louie's HUWE1 Foundation
Instagram: @louies_huwe
Linktree: https://linktr.ee/LouiesHUWE
Instagram: @unbreakablelouiecoulter
Support Louie's HUWE1 by Ordering Local Flowers
Branches and Batches on Facebook
This Episode's Storied Recipe
Recipe Shared by Elizabeth Coulter
Pollo Frito (Puerto Rican Fried Chicken)
The perfect Pollo Frito begins with marinating the chicken! Then fry for a perfect finish. SO delicious & flavorful!!
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melissa says
I am extremely biased, but I think this is the best episode you have ever done. Becky, you ask wonderful questions and I think you did such a fine job incorporating the multiple storylines (Heritage, Keto, Louie, Charity, etc). Elizabeth is a model spokesperson for HUWE1 and her love for Louie / passion for her calling really shines through. I could go on an on. You all did a great service to Louie and the Rare Orphan Disease community getting the word out there and emphasizing why it's so important to think about the "little guys" too. Thank you for this podcast!!!!!!!!
admin says
Melissa, thank you so much for taking the time to comment!!!! Elizabeth was an ideal guest. As you say, she is a truly remarkable woman with a high calling that she is faithfully answering with so much courage and vulnerability and resilience. It's an inspiration for us all and I'm here to soak up everything we can learn from her and the people who made her who she is. Thank you for coordinating this interview!!!