Our daughter Alix is 18 years old and after attending mainstream primary school went to a specialist school. She now attends a specialist residential college Monday to Friday on a path towards supported living. She is a very happy young lady and loves music, dancing (‘Strictly’ is a particular favourite) and her dog.

We have known Alix has difficulties since birth but she wasn’t diagnosed with DDX3X until she was 15. Alix has severe learning difficulties, hypotonia, a visual impairment, poor gut transit and uses a specialised app on her ipad for most of her communication. In addition Alix has type 1 diabetes and a heart anomaly but these are not necessarily related to DDX3X changes.

Key professionals working with Alix have been physio, OT and most of all speech and language therapists. Some of her key successes have been walking out of her walking frame at about 5 years old, learning to tell us her favourite dancers using her ‘Speak for yourself’ app at about 12 years old and learning to use the bus (with assistance) to get to her music therapy sessions aged 16.

Alix gets 1:1 support at college and receives some direct payments for help at home. These are vital for her to develop some of the independence that an 18 year old should have from their parents. Alix enjoys using them to visit cafes, go to the shops and at least twice a year to a theme park as she is a rollercoaster fanatic!