Myles is an extremely hard working and determined little boy. He works so hard every week in therapy and wants nothing more than to move and do things on his own. We are so thankful for that.
We gave Clara the middle name Hope because she had nothing but yet her smile was so bright and she was so full of hope.
On January 31, 2022, we received the results of the last genetic tests carried out. Lucas was diagnosed with GRIN1.
Abby was born in December 2020 with two holes in her heart, called an ASD and a VSD (most likely not part of her GRIA2 disorder).
Ashleigh has a very rare genetic disorder called GRIA2 related neuro development disorder. Ashleigh is 15 years old and her condition was first diagnosed in 2019.
Jaydan is amazing. She is a loving, caring, hilarious daughter, sister and friend. Jaydan is nine years old and is doing rather well now, considering her challenges, but her story didn’t start this way.
Our daughter Katie is an only child, is almost 16 years old, and has a rare gene mutation called GRIK2.
My daughter, Victoria, was born on 10/28/2018 as a healthy girl. There was an episode of fainting in the first month of her life. At that point, we had no diagnosis.