NAME: Alora Jean Allen



DIAGNOSIS DATE: February 2019

PARENTS: Jeff & Taffi Allen

SIBLINGS: Wyatt, Melina, and Quade

What it felt like when we learned our child has SLC6A1? 

1. Relief. It’s SOMETHING. And you can do something about something. 

2. Confusion. How can we know what it is but know so little about it? 

3. Realization and Depression. There is hardly anything out there. Where do we go from here?

4. Hope. Finding SLC6A1 Connect and connecting with others who are walking the path with you, who have walked the path before you, who need you. Knowing you are not alone.

How did you know something was wrong? Alora started expressing autism symptoms around 12-15 months: loss of language, eye contact, sensory processing, etc. She had her first major seizure at 20 months where she stopped breathing for about 2 minutes. These seizures escalated to a point where she now requires rescue meds EVERY time she has one of this type. Years later, we discovered she has multiple seizure types and was also likely experiencing seizure activity with no outward signs from a younger age than we were aware.  

The hardest part of being an SLC6A1 family? It’s hard to describe to others. Everyone knows someone with autism or epilepsy and they think they know what you and your child goes through… but this is different. Not only does Alora struggle to make advancements with autism but she struggles to not backslide with seizure activity. She’s constantly fighting a current that never ebbs. We don’t have good days and bad days anymore; we live life moment to moment.

What are your dreams for Alora? Alora is still nonverbal at 9 but she exudes love. It is her language. If love were a tangible thing, it would be a perfumed cloud around my daughter, tractor beams coming from her eyes, and a warm blanket from her presence. It may sound silly to say but I have never experienced it in another person to the degree that it just is with her. My dream would be for her to be able to shine that love at the world. Whether she shows kindness to a stranger or is the next Mother Theresa, the world needs more people like her.

Why would you like people to donate to SLC6A1 Connect? Our children have so much potential. We just want them to have the ability to realize it. They deserve to reach for dreams that are bigger than their current reality. They WILL make a difference in the world that is much bigger than their peers because they know what it’s like to struggle with things that others take for granted. And someday, with the help of those who donate, parents won’t have to wonder if their children will ever dream for themselves.

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