Sohana Collins has a rare disorder recessive dystrophic epidermolysis bullosa which means the slightest touch makes her skin blister like she has third degree burns.
From the sunny smile lighting up nine-year-old Sohana's pretty face you would never imagine that she lives every day in terrible pain.
And, tragically, a comforting hug from her mum or dad is out of the question. In fact, when she was lovingly cradled in her mother Sharmila's arms, moments after being born, it was the last proper cuddle the two would ever share. But devoted mother Sharmila, 43, is on a mission to raise the £5million needed to fund research into RDEB - and find a cure before it is too late.
She joins us now with Sohana to talk about their heartbreaking story.