James is a happy, active boy who lives in the Southeast USA on his parent’s organic vegetable farm.  It took 12 years of extensive genetic testing and investigation across four states (and Australia) to find this new diagnosis.  And while we are grateful for the answers and community, it does not change our love for James – a love that has evolved and deepened with each year.  The diagnosis also does not change how we see him as a unique person with many wonderful attributes.   

James is a wonderful teacher.  Every person whose paths cross with James is given an opportunity to see the world through a different palate of colors, sounds and sensations.  The world is a better place with James in it.    

James loves to play outside, splashing in water, going on stroller rides in the woods, observation other kids at the playground — and always sensory curious.  He is on the go!

James’ biggest challenge has been an ever-evolving, complex epilepsy. James is non-speaking but communicates incredibly well with PECS / picture cards, and he has exceptional listening skills – never misses anything, and is a keen observer. 

There have been many hard nights and scary days – at times feeling completely lost and alone – but those moments are softened by the smiles, laughter and joy we also find.

We just received the diagnosis from UDN Vanderbilt and trying to make sense of this and how it may affect our sense of community and collective understanding of the situation. But this new community itself is invaluable to us – so thank you to everyone for sharing and taking the time to read about a phenomenal boy.