Brave Ellie Luther gives a big smile to show just what a little fighter she isEllie Luther

As the five-year-old plays in her garden, she’s blissfully unaware she has a one-in-a-million skin condition which could kill her.

Ellie, from South Shields, is one of just a handful of children with Harlequin ichthyosis, a condition so extreme doctors had difficulty diagnosing it.