A MOTHER who is hoping to crowdfund medical equipment for her daughter, has spoken about the “life changing” moment she discovered that her baby has a condition which leaves her in "constant pain".

When Pippa Atkinson was born in July 2016, 90 per cent of the skin on her hands and feet was missing.

Her mother Rhiannon said: “It was as if somebody had taken boiling water and dipped her hands and feet into the water, it was awful.

"They were just raw down to the muscle.

“She spent four months in hand bandages and she spent nearly nine months in foot bandages.

"They were the only two things she had when she was born, but then movement and handling, those normal things have created blisters.

“Even putting clothes on and taking them off, that amount of friction causes blisters."

Pippa was diagnosed with Epidermolysis Bullosa (EB), a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch. Those born with EB are often called ‘butterfly children’ because their skin is as fragile as the wing of a butterfly.

DEBRA, the national charity for people affected by EB, estimates that there are 5,000 people living with EB in the UK, and 500,000 worldwide.

The diagnosis was a huge shock to Ponthir couple Mrs Atkinson and her husband Damian.

Mrs Atkinson says the diagnosis changed their lives. She has taken a long-term break from her job at a bank to care for her daughter and they have to keep the house at a cool temperature for Pippa.

She explained: “The condition is listed as one of the 10 most painful in the world and the pain is constant for her. Every little thing causes her pain and blisters. The clothes that she wears, nappies, eating, even washing her hair and brushing teeth will cause her blisters.

“Everything in everyday life that we take for granted causes blisters on Pippa.”

The condition is incurable and the family have to give Pippa morphine and sedatives for the pain. They also have to lance and drain her blisters daily and that can take between an hour to three hours.

Mrs Atkinson added: “As much as I wish she didn’t have EB and I pray every day that I get a call that there is a cure I wouldn’t change her for the world because she is phenomenal. She is just like any other child and she is happy and wants to be involved with everyone.”

The family have launched an appeal to raise the money for a specialist bath which injects micro-air bubbles into the water, which gently exfoliate the skin to remove dead skin and scabs.

This is the only form of treatment available for EB, and will be important as Pippa grows.

The family also want to build a one-bedroom extension to accommodate specialist bathing and changing facilities.

Mrs Atkinson said: “At the moment we lance her blisters in her bedroom, so it’s not a nice place for her. The new bathroom would mean she has an area which would reduce her stress.”

The family have estimated that the building costs for a one bedroom extension with bathroom will cost £17,000, the bath £5,000 and have budgeted £3,000 for decorating and maintenance.

To help visit just.ly/helpingpippa