Three year-old from Ohio diagnosed with recessive dystrophic epidermolysis bullosa (RDEB)

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Lily

A three-year-old girl from Ohio, US, is suffering from recessive dystrophic epidermolysis bullosa (RDEB) which causes her skin to tear off at the slightest touch.

Lily Mackey has been suffering from this disease ever since she was born and doctors noticed it first when she was just two days old. Any friction also causes Lily Mackey’s skin to blister. This leaves her with open wounds which puts her at risk of contracting deadly infections.

Currently the girl is receiving new treatment, which “dampens her immune system”, the report states. The disorder is also called ‘butterfly skin’.

What is epidermolysis bullosa (EB)? It is a term used to describe a group of rare skin disorders that are inherited and makes the skin fragile. One in 50,000 people are affected by EB around the world. While there is no cure, there is treatment to help relive plain and treat infections. Recessive dystrophic, the one Lily has, is among the most severe forms.

To prevent Lily from getting any infections, her parents have to wrap her entire body in bandages. Her mother Faith told the Daily Mail she has nicknamed her girl a real life ‘mummy’. They have also covered all their carpets and floors in the home with memory foam. Lily also requires 2,500 calories daily to prevent malnutrition and heal the damages her body has to endure.

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