Say hello to Kaitlin (aka Kaity Bug)! This sweet girl is 17 and lives in Denver, Colorado. Kaitlin was diagnosed with a GRIN1 mutation in 2016 when she was ten years old. Ten years is a long time to wonder and worry…but getting an answer – and with it, a community of families to be a part of, learn from, share with and lean on was worth the wait. It changed everything…and it changed nothing.

We knew that our girl was perfect with and without a label – and that she would continue to need us and also inspire us, every single day.  But we are profoundly grateful for the community of families who also have a loved one living with GRI disorders. Our Kaitlin enjoys swimming, swinging, car rides and bike rides. She loves her big sister Kylie and her sweet service dog Soleil, as well as her many stuffed animals! Kaitlin is all about pop music – especially Taylor Swift – and anything tactile to keep her hands busy. Kaitlin is non-verbal and along with having intellectual disability, she is challenged with a few other common difficulties of the GRIN1 mutation, like intractable epilepsy, and cortical vision impairment.

We know that Kaitlin’s ability to walk independently (and dance and jump and jog) is a blessing and it’s fun to celebrate all the small things (that are all ultimately really big things) that our girl can do – and we marvel that she is still learning every day. Kaitlin has touched so many lives with her sweet and silent smile, courageous determination and gentle demeanor – and has taught us all about bravery, inclusion, patience, advocacy, hope, strength, unconditional love, and much much more. It has been a privilege to walk this journey with her and we do so with pride. We love you endlessly, Kaitlin Mary!