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Callum's Story

This is the story of our son, Callum — a joyful, determined little boy living with STXBP1, a rare genetic disorder also known as syntaxin binding protein 1 encephalopathy. When Callum was diagnosed, we learned that STXBP1-related disorders can cause developmental delays, epilepsy, movement disorders, hypotonia, and other challenges. Since then, our mission has been twofold: 1️⃣ Give Callum the specialized therapies he needs to reach his fullest potential. 2️⃣ Raise funds for rare disease research, gene therapy, and clinical trials that could change the future for everyone affected by STXBP1. In this video, you’ll see glimpses of Callum’s daily life — from tackling milestones to facing obstacles with courage — and learn more about why we fight for progress. We’re proud to be part of the global STXBP1 family and rare disease community, working together for awareness, advocacy, and hope. Every donation, share, or word of encouragement helps fund STXBP1 research, support disability advocacy, and keep our dream alive for better treatments — and one day, a cure. 💜 📢 Help us spread STXBP1 awareness:     •    Share this video     •    Join our next fundraiser for STXBP1     •    Follow our journey here on YouTube #STXBP1 #RareDiseaseAwareness #TeamCallum #EpilepsyAwareness #GeneTherapy #RareGeneticDisorder #Fundraiser