On October 12, our family will be walking, running, or rolling with our global community for the BOUNDLESS POSSIBILITIES 2025 Virtual Run, Walk, or Roll fundraiser for the CSNK2A1/OCNDS Foundation.
The CSNK2A1 Foundation is the only organization specifically dedicated to research and support for people living with Okur-Chung NeuroDevelopmental Syndrome (OCNDS). On November 3, it will be two years since our son Silas being diagnosed with OCNDS.
For those who do not know, OCNDS is an ultra rare genetic condition caused by a mutation in the CSNK2A1 gene. Individuals impacted experience different degrees of global developmental delay and/or differences in brain function, and there is no known cure. This condition is so rare that there are less than 350 known cases in the world.
We like to think this is another example of just how unique and special our Silas truly is we would love it if you would consider supporting us by donating to the cause.
Silas' journey has been a lot of ups and downs. He us 4 years old now and OCNDS has caused significant issues with feeding, his ability to walk, his size and growth, ability to process and repeat learned tasks and skills (apraxia), and causes him to have regular seizures (obviously, very scary). Over this last year we have seen Silas continue his journey with this condition and he continues to light up our lives with his smile, his laugh, and his accomplishments. And though he remains non-verbal, he keeps showing us that love needs no voice.
We are dedicated to following him on "his curve", and we remain hopeful but uncertain where this is all going. Sometimes we laugh, sometimes we cry, sometimes we scream, sometimes we hurt, sometimes we hug, sometimes we disappear, sometimes we show up, sometimes we're doing okay, sometimes we breathe, sometimes we struggle, sometimes it's a lot. Sometimes.
But always always always, we love. And we never give up, we don't ever give up. Together. We believe in the BOUNDLESS POSSIBILITIES that await him and us all on this journey!
This is not one of those fundraisers that you might get from my kid's school that I'm okay with you ignoring - THIS ONE CAN ACTUALLY MAKE A HUGE DIFFERENCE! So, please, if you are able, please support our fundraiser by walking, running, or rolling with us (in-person or wherever you are) and donating to the cause.
