A Tubulin Beta III Warrior

Alaya was diagnosed with TUBB3 at 6 months old, which stands for Tubulin Beta III and is located on Chromosome 16.

TUBB3 is an ultra-rare genetic syndrome with less than 200 patients diagnosed worldwide. Alaya is 1-5 with her specific mutation. A deletion or mutation in the TUBB3 gene can cause a spectrum of nervous system disorders, including CVI, epilepsy, cyclical vomiting syndrome, intellectual and physical delays, feeding issues, microcephaly, dystonia, and hypertonia.

However, nothing stops Alaya from being her sassy, sweet, and cuddly self! She's always babbling up a storm to anyone who will listen and will cuddle for hours and hours! Her laugh is the most mesmerizing, magical thing in the world, and she is just pure joy!

She crushes the odds stacked against her every day, and I couldn't be more proud of my WARRIOR.

  • She LOVES lights and shiny things, Bluey, the color red, and cheetah print! 
  • Morgan Wallen is her JAM.
  • She likes swinging, swimming, and bathtime; anything water-related, really.
  • Pink, green, and zebra prints are the TUBB3 awareness "theme."
  • She also LOVES dogs (especially her uncle's pug "Buzz").

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