Stories

Dear SCN8A

October 5, 2024

During our Health Equity Forum at Week in RARE 2024, Suzanne Edison led a great workshop for writing a letter to your rare disease and crafting a mask that shows the super power you have to deeal with that disease.

Shelley Frappier wrote this piece:

A purple spiral, a blue tear or water drop and orange flames

Dear SCN8A (a short story)

Dear SCN8A,
You are like a snake hiding in the grass. We never know when you are going to strike! If you weren’t so surprising or hidden I wouldn’t be so f#@%ing scared of you. I am so full of grief and sadness for my entire family and community. I feel as if I am on continuous spiral. Never really coming in and out of grief but always moving in and out of it. SCN8A, you are relentless and have chosen the wrong woman to fight with. I am fire and will continue to burn until my last breath for Nico and the entire SCN8A community. Kindly f#@% off!

xo Shelley
– Mama  to Nico and advocate for all.

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