Daniella is aged 15 years old. She was born 9 days early and at first things did seem right. I was breast feeding and she was losing weight so we put her on a bottle.
Daniella didn't meet her milestone. She didn't walk until she was 2 1/2 and had no speech either. At the age of one she was diagnosed with global development delay. She was put forward for autism and at the age of 3 was told she didn't meet the criteria then the speech and language we had put her back in for it and at the age of 6 she was diagnosed with autism.
At the age of 7 she was diagnosed with epilepsy and this has been a battle getting it under control so she is now on a waiting list for vns surgery. We are looking for more information about syngap1 people who have had absence seizures and had vns surgery as her consultant would like some research on this.
The impact on the family it hasn't been bad we have had up and down with the epilepsy and the autism but as a family we pull together. Daniella was diagnosed with syngap1 3 years ago by doing a ddd study. She loves been outside in the rain,wind,snow and sun and at the moment she doesn't like getting in a bath or a shower.
She loves food and will eat anything that is put in front of her