A Surbiton schoolgirl with "one of the most painful and distressing genetic disorders" a child can be born with will soon be thrust into the limelight.

Poppy Gee has the rare skin disorder Epidermolysis Bullos and has now been chose by the charity Cure EB to front a fundraising and awareness campaign.

This disorder means that Poppy is missing the proteins that glue skin together so it is unable to repair itself when it damaged.

Poppy’s mum Kate said the past six years have been extremely tough.

Poppy was born with no skin on her left leg," she said.

"We were told we wouldn’t be able to cuddle her. She was so delicate we had to carry her on pillows for the first four months of her life. My husband Pete and I could let her roll when she was a baby, if she was well padded but we couldn’t let her crawl because of the damage if would do to her hands and knees.

“Poppy has to wear bandages every day of her life to prevent her skin being damaged.

"She has to have pureed food because the skin in her mouth and throat is delicate too. Every evening I have to change her dressings and pop painful blisters on her skin that scar if you leave them.”

The charity’s chief executive, Sharmila Collins, said that in spite of the hardships caused by her condition, Poppy has been a fantastic ambassador for Cure EB which is why she was chosen to front the #EBpop campaign.

"Poppy is a little star," Mrs Collins said.

"She is incredibly upbeat and won’t waste a moment telling adults they need to find a cure for EB and with her name was a natural fit to front EBpop."

“Cure EB funds essential research and we feel we are really close to breakthroughs in both managing this devastating life-limiting condition and finding a cure.”