Playlist 20 videos

You need only take a glance at Ashanti Elliott-Smith to know that she doesn’t look like most little girls. However, her mum Phoebe explains that when Ashanti was born, they thought she was ‘a normal, perfect baby’. But doctors knew there was something wrong with her. Despite being tested for a variety of problems – including shaken-baby syndrome and meningitis – the experts couldn’t explain what was the matter.


In this touching video, made when Ashanti was 7, Phoebe reveals the torment of not knowing what was wrong with her baby – and how she demanded a diagnosis from doctors.

Having been referred to London’s Great Ormond Street Hospital just before her first birthday, within a couple of hours premature ageing condition progeria had been identified, and tests confirmed it.

When asked about her hopes and fears for Ashanti’s future, doting mum Phoebe admits her biggest fear is ‘burying my baby’ – and as for hopes, like most mums, she can’t help but picture her daughter on her wedding day.