Ellie’s mum Julia says “We were so delighted when our first child was born. Eleanor Rose was complete, petite and with a halo of red hair. She captured her father’s heart the moment he held her. By the end of her first year, as she failed to reach a range of developmental milestones, the realisation dawned that she was indeed uniquely special and would need all the love and care we could lavish on her and then some more. In the years that followed we determined that she would know, with her two younger brothers, what it was to have a ‘normal’ childhood and got on with being a family, albeit ‘with a difference’.