Chosen for This? Special Needs Advocate Elizabeth Coulter Story

Today’s guest, Elizabeth, is the mother of four very young children. Her oldest, Louie, was born with an extremely rare genetic condition — so rare he was only the 12th person worldwide to receive the diagnosis. The mutation was described as “de novo,” which in genetics means it arose spontaneously in Louie rather than being inherited from Elizabeth or her husband.

When Louie was five, just as Elizabeth was settling into life as a special-needs parent, a new and devastating challenge arrived seemingly overnight. One night they went to bed and were awakened at midnight when Louie began having a seizure. Then another, and then more — in a matter of hours the seizures multiplied. Since that night, Louie has experienced dozens, and at times 40–50 seizures in a single day. After trying many options, doctors recommended the ketogenic diet, which has offered Louie meaningful, though not complete, relief for now.

Despite hearing the phrase “de novo” repeatedly, Elizabeth does not see these events as random. She believes strongly that God chose her for this role and provided the resources she needed: her Puerto Rican roots, the wisdom of her abuela, supportive family on both her Puerto Rican and German sides, and the faith to keep fighting for Louie and families like theirs. Motivated by that conviction, she started a nonprofit called Louie’s HUWE to connect, support, and serve other families and to raise funds for research that might improve the quality of life for children with similar challenges.

In this episode, Elizabeth shares many intimate stories — from memories of her abuela’s pollo frito to the moment Louie was born. Her perspective is shaped by culture, faith, and the raw demands of caregiving. We’re honored she joined us and glad you’re here to listen.

Highlights

• Pollo frito and family food memories
• Elizabeth’s Puerto Rican and German heritage
• Being blindsided by Louie’s rare diagnosis
• Louie’s fascination with circles — “Find a man who loves you like Louie looks at circles”
• Seizure onset: going from zero to 50–60 a day in one night
• The ketogenic diet and how it helps Louie’s seizures
• The Great Facebook purge many special-needs parents experience
• How to be a supportive friend to a special-needs parent
• Sibling dynamics when one child has complex needs
• Sleep and self-care for a parent whose child has frequent seizures
• Considerations and risks of a high-fat diet in children
• Lessons learned: “Everybody has something”
• Louie’s HUWE — the research foundation Elizabeth launched
• Faith and special needs: “This is God’s way of bringing people together”
• Connections between special needs, faith, and the film Encanto
• Ways to support Elizabeth, Louie, and other HUWE families
• Learning to ask for and accept help

Listen to Elizabeth Now

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Elizabeth’s Storied Recipe: Puerto Rican Pollo Frito (Fried Chicken)

Pollo Frito: Puerto Rican Fried Chicken (Without Flour)

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

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