Maya was born a little bit premature at 37 weeks. We only started to realize that there was something off at around 6 months. I raised concerns at her 8 month check, but the doctor said all was fine. By the time she was a year old, she still wasn’t sitting and that’s when I got all the referrals going.
Since then she’s had many appointments for a variety of issues, but we only got her diagnosis 6 months ago when she was almost 10 years old. This was a relief, but also quite saddening as it closed possibilities. Maya is affected with GRIN1 and this means her speech is severely delayed, her movement is impaired, she has tummy and sleep issues as well as behavioral issues.
We are always looking for new ways to help her progress and she is doing so great, albeit at a much slower rate than a typical child. She is delightful, but can also be very challenging. She’s very stubborn, very determined, resilient in character and full of mischief!!!
As her understanding is much higher than her communication level, this often leads to frustration for Maya, however, her desire to communicate remains strong. We just want her to have the fullest life possible, to be as independent as possible and are eagerly awaiting a cure for her.
