Flynn's story

Our son Flynn was around two years old when we realised he had sensory and behaviour issues. He was diagnosed at about four with autism and then at six with ADHD. Flynn had food issues, his hunger was insatiable and he would eat non-edible items. He could be violent towards others without realising his strength as he was a big boy. He also had febrile convulsions from six weeks old and later had vacant seizures that lasted for hours and was diagnosed with epilepsy at seven years old.

We knew there was something else going on so he was referred to a geneticist who tested him for a few other things that came back negative, but she was sure he had a type of overgrowth syndrome. I went home and researched and came upon the Tatton Brown Rahman Syndrome (dnmt3a) group on Facebook - I knew instantly this is what Flynn has as the features of the others were so like Flynn.

None

By Flynn’s Mum Charlotte