Hi! Meet Sofia who is 18 months old from England Liverpool. She was diagnosed with GRIN2A when she was a few months old. My pregnancy was perfect, the same as all 3 of my other pregnancies. Sofia started off having seizures at only 24 hours old and it was the scariest day of my life!  We ended up in hospital for a couple of weeks getting loads of tests done. It ended up being epilepsy which triggers every day still to this day.

That’s when I knew something was not right and that my little girl would be special to us. Sofia started having delays in everything and when we finally got our genetics back that broke me so much. Sofia still can’t hold her head up, use her hands, sit up or use legs, but I promised her we will try no matter how long it takes.

Sofia is NG fed and requires a cpap when asleep. She also has a lot of hospital stays. Sofia means so much to me. She has the best family and support.

Sofia is the most lovable little girl ever! She has beautiful red hair and big blue eyes and her eyes speak for her. She looks at you and you just know she is telling us I love you mummy. Our journey has only just started, but I know it will be a journey of love for Sofia. I have tried to keep her life as normal as I can while she is still little, as I want her to experience everything that she should. Sofia attends nursery, who have been amazing with her and have adapted to her complex needs. She also attends a baby hospice, Zoes place, who are like a 2nd family to us. This is our little journey up to now.