Epidermolysis bullosa sufferer, 4, can’t be hugged

A four-year-old girl with a rare condition has been nicknamed ‘butterfly girl’ – because her skin can tear off with the slightest touch.

Jasmine Ritchie is covered with painful blisters and is so fragile her mother cannot hug her or hold her hand. 

Even eating is an agonising process for the brave little girl, as the inside of her throat is covered in sores.

Jasmine is one of just 5,000 people living with epidermolysis bullosa (EB) in the UK. 

She wears bandages all the time as any friction can cause her delicate skin to flare up. 

Her mother Anna, from Leonard Stanley, Gloucestershire, called her ‘the bravest little butterfly I know’. 

Jasmine Ritchie, from Gloucestshire, has epidermolysis bullosa which is extremely life-limiting

‘She battles with EB every day of her life,’ she said.

‘Living with EB makes us appreciate the smallest of milestones in Jasmine’s life, ones that we initially thought she may never reach – a cuddle, a crawl, a spoonful of food, going to school.

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‘Every day she shows us that she’s not giving up, so neither will we.’

Mrs Ritchie and her husband Iain struggled to accept the doctor’s diagnosis after Jasmine was born with a blister on her knee.

They knew it meant her condition is incurable and she faces a life of painful open wounds and sores which form where her exceptionally fragile skin is damaged.

Her parents, Anna and Iain, can only hug their daughter Jasmine when she has bandages on

The reception year pupil cannot join in with school friends playing because of her condition

In some cases with EB – which is genetic – internal linings and organs are also affected and infections can occur.

Mrs Ritchie said: ‘As soon as I fell pregnant you map out your life and imagine how it’s going to be.

‘When she was a baby you had to cuddle her with a pillow.’

The couple, who have a seven-year-old daughter Amelia, provide round-the clock care for Jasmine.

Her feet are bandaged and her torso and elbows are also wrapped in protective fabric, which has to be changed every day.

Mrs Ritchie tries to make life as normal as possible for Jasmine (left), pictured here with sister Amelia

Mrs Ritchie said: ‘We have to lance or drain every blister that we find and then bandage her every day.

‘Every single day her feet have been bandaged, they have never been out of bandages.’ 

Mrs Ritchie said it breaks her heart that her little girl cannot run around like other children. 

‘Jasmine can’t come for walks with us, we have to put her in a wheelchair. If she walks any distance her feet are at risk.

‘She can’t go to the play park like other children, and when I see her running my heart is thumping in my chest.

‘There have been instances when children wouldn’t go near here. But she’s very strong willed and got a strong personality.’ 

Jasmine has already had three operations on her throat to make eating less uncomfortable.

Smiling: There is currently no known cure for EB but the family remain hopeful

‘I just don’t know how she eats. She’s very resilient,’ said her mother.

Jasmine’s family live in hope that a cure will be found for the devastating condition.

Mrs Ritchie said: ‘There is no cure for EB, but I truly believe that there is one, and one that will be found in Jasmine’s lifetime.’

WHAT IS EB?

Epidermolysis bullosa (EB) is a general term used to describe a group of rare, inherited skin disorders that cause the skin to become very fragile.

Any trauma or friction makes the skin blister.

EB affects around one in every 50,000 people worldwide.

There is no cure, with treatment focusing on relieving pain and treating complications, such as infections.

Source: NHS Choices

Mrs Ritchie and her friend Julie Crews will be taking on a 100-mile charity walk in a bid to raise funds for DEBRA, which supports individuals and families suffering from the debilitating illness.

The walk, from London to Brighton, could take up to 36 hours and the pair were training regularly to help them prepare, calling their campaign Blisters for Butterflies.

Mrs Ritchie said: ‘We’ve put ourselves through a lot of pain and discomfort, but realise that it’s still pretty insignificant compared to the blisters that Jasmine endures every day.

‘It is for this reason that there is nothing that will stop us reaching the end, even if we have to crawl to the finish.’

To donate to Mrs Ritchie’s fundraising walk visit here.