If you are the parent or carer of a child diagnosed with FOXG1 Syndrome then you are in the right place. We have a very active and friendly Facebook groups for the UK, Internationally and for news about FOXG1 Research. They are closed groups and are for direct carers only. This is so that you can be sure any information you share in the group is confidential. Please don't ask for extended family to be included in these groups. We have a Family and Friends that they are welcome to join and we hope that they will support us.
"I was totally shocked to get the diagnose of FOXG1 Syndrome. I was really worried about what it would mean for the future."
"To be honest I was relieved I knew that there was something wrong and it was really helpful to know why."
Any emotions you are feeling about the diagnosis will have been felt by someone before you. Whatever your reaction it is perfectly normal to go through a period of adjustment. You probably want to know what the chances that your child will walk or talk. Whether they will feed themselves or ever be toilet trained. It can be a scary prospect caring for a child with a disability. It's OK to be angry or sad. It's also OK to be happy and for life to go on. Join the Facebook groups below to connect with other parents and carers. Don't be afraid to ask questions, someone is sure to help you make sense of your situation.