Sean was born full term and everything was going well until one morning when Sean was few days old. I was trying to feed him and he went floppy in my arms, blue eyes fixed having a seizure.
This was the start of our journey. Sean had in total around 33 seizures in the space of an hour and a half that morning which lead to us being rushed into high depandancy where a MRI, CT, EEG, ECG, and lumberpuncture tests were all carried out. It was during this time we found out Sean has FOXG1 syndrome - there is only around 233 kids wordwide with this condition which affects mobility, speech and vision. Sean is currently peg fed, non verbal & also wheelchair bound. Due to being non mobile we attend monthly hospital appointments to see neurologists pyhsio etc.
Sean is such a happy smiley boy who loves bright colours and loves to listen to the pentatonix (hallelujah) and nursery rhymes. He attends a special needs nursery twice a week for pyhsio & music therapy.