Ashleigh has a very rare genetic disorder called GRIA2 related neuro development disorder (bit of a mouthful I know!). Ashleigh is 15 years old and her condition was first diagnosed in 2019.

Ashleigh is mostly non verbal (very few limited words) however, she is the loudest person I know!!! Her behavior fluctuates between long periods of screaming which can seem very happy screaming or very upset/aggressive crying to extremely heightened/manic episodes. In both her aggressive and heightened state she can be very physical, hitting out, pinching, kicking and also injuring herself. She also has dysphagia, cortical visual impairment, sensory proprioceptive disorder, she is incontinent and has autistic traits.

Although Ashleigh is non verbal she has really good understanding and I know she is capable of so much more! We just need more research into these genes to try to understand how we can help the many children with GRI conditions and their families. 

Recently I was lucky enough to come across a group on Facebook that was a group for all GRI related conditions, through this group I again was lucky enough to be put in touch with Curegrin. Curegrin was a foundation set up by parents of a child with a GRIN disorder searching for a cure!

Long story short, the experts have realized that all the GRI gene problems cause very similar symptoms which has brought us all together as a GRI community! We are trying to raise awareness and funding for more research in to the genes to help not just our children but the children of the future who may be diagnosed with these conditions. The more awareness and funding we can get the more research will be done in to finding a cure/treatment, #GRIA2