Move to Cure STXBP1 Disorders

Welcome to Team Callum's Fundraising Page! 

On August 29th, 2022 I got a phone call that would change our lives forever. It was Callie’s neurologist. She was calling with the results of his genetic testing, something I never thought would bring us answers. I really thought it would all come back normal, but obviously that’s not what happened. She told us he had a very rare genetic condition called STXBP1 and that we should google it and she’d tell us more at our next appointment. Note, you should not google it, but google it we did. The Thorns were visiting us and although I don’t remember much about that day I do remember reading aloud the words “intellectual disability” and “hard to control seizures”. I was 8 months pregnant with Zi at the time and I just could not wrap my head around any of it.

The coming months were filled with an immense amount of grief and mourning. We were so scared, more scared than we’d ever been of anything before. Sticky and Andy had a gig that night and I just remember sitting with Cecelia and Barry and watching him do all the things my Callum might never do.

there’s still a lot of grief and mourning, my therapist says it’s cyclical and will ebb and flow as Callie develops. Great! But now there’s hope and pride and awe too, bc that sunshine boy has brought so much love and joy to our lives, and to anyone who knows him. And on the anniversary of getting his diagnosis he’s starting preschool, another life changing event for our family. We’re so proud of this guy, and are so excited for this next phase of the journey. 

Thank you in advance for your generous donation to the STXBP1 Foundation, we are thrilled to have you join Team Callum! Your donation and participation means the world to us and the entire STXBP1 community! Donations directly fund critical research for treatments, therapies, and a cure for STXBP1 disorders. 

Buy custom team shirts here