So I know I’ve been away from this blog for a while (I get distracted I’m sorry OTL) and I don’t really like making posts about personal issues, or ooc posts in general, but... this one is too important not to post. And I’m sorry if this is a bit longwinded. TLDR; Wear purple on Feb. 9th to raise awareness about SCN8A Epilepsy.
There are many forms of epilepsy, and one such form that not a lot of people know about is SCN8A epilepsy. It’s caused by a mutation in the SCN8A gene, SCN8A is a gene that affects how brain cells function.
The reason I make this post is because tomorrow (Sunday, Feb. 9) is worldwide SCN8A awareness day.
Nearly one year ago to the day my nephew, Otto or “Otto the Great” as we’ve come to call him, was diagnosed with this form of epilepsy. There are only around 250 cases reported worldwide, and this sweet little boy has the ONLY variant of this mutation, which means treatment and seizure management have been nearly impossible. My sister has been through doctor visit after doctor visit with no end in sight. He’ll be 2 this year, and has probably had more seizures in his short life than anyone could count. They last anywhere from 5 - 20 minutes, and can have up to 15 in one day.
I’m not asking for donations or anything like that, just awareness. The more people that know about this terrible condition, the more research can be funded.
What I am asking is, on Sunday, February 9th, wear purple. It is the color chosen to raise awareness, much like pink is for breast cancer.
Thanks guys, hearts and hugs.
Otto’s Journey: https://www.facebook.com/OttoScn8a/
The Cute Syndrome Foundation: https://www.thecutesyndrome.com/
