Charlotte Edward is now aged 22 and wasn’t diagnosed until she was 10. The first signs of something being wrong was at her 8 month check, but looking back, she didn’t grab anything aged 6 months. Charlotte is happy, smiley and loves everyone. She can walk with support, drink unaided from a lidded beaker, can sit unsupported, she’s learning to feed herself and she’s also learning to use switches to communicate. We have found Portage and Conductive education to be the most important interventions Charlotte has had. The biggest obstacle has been the fighting to get respite care and appropriate education. My advice to families starting this journey is to follow up every suggestion – you never know what it leads to. Charlotte’s younger sister is very caring and is now training to be a doctor – attributes which may not have been nurtured if she didn’t have Charlotte in her life.
