EP22 – Rare Mamas Rising-Finding Meaning & Purpose with STXBP1 Foundation Director of Development & Rare Mama Melissa Hioco
Rare Mamas Rising Melissa Hioco

Rare Mamas Rising Episode 22

After discovering her son Alex had STXBP1, a rare neuro-developmental disorder, and finding there was little information known about the disorder, Melissa Hioco found an online STXBP1 parent community and got involved. Today, she is a founding member and the Director of Development for the STXBP1 Foundation, a parent-led nonprofit leading the charge for a cure for STXBP1 disorders. Within this new world, through the pain and struggle, she has realized her purpose and has evolved into an unrelenting advocate for the STXBP1 community, supporting her fellow rare disease mamas and often turning to her faith for strength and inspiration. In this episode, Melissa exudes courage and grace as she discusses shifting perspectives, embracing this life, making the most of it, and finding meaning and purpose along the way.

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EPISODE HIGHLIGHTS

  • Alex’s diagnosis and their family’s entry into the world of rare disease
  • How Melissa forged forward after Alex’s diagnosis
  • The ways Melissa rises to the challenge of being a rare mama
  • The work Melissa does as the Director of Development for The STXBP1 Foundation
  • Finding her purpose working with the STXBP1 Foundation
  • Teaching others that every life is valuable
  • Finding the gifts in rare life
  • Melissa’s best advice for other rare mamas

 

LINKS & RESOURCES MENTIONED

STXBP1

Website: https://www.stxbp1disorders.org/

Instagram: https://www.instagram.com/stxbp1_foundation/ 

Facebook: https://www.facebook.com/stxdisorders