A four-year-old with a rare condition has been nicknamed ‘butterfly girl’ – because she is so fragile her mum can’t hold her hand or hug her.
Jasmith Ritchine was born with a blister on her knee and medics diagnosed her with epidermolysis Bullosa (EB).
The rare condition causes the skin to tear at the slightest touch and leaves her with delibitating blistering.
Her skin so fragile it is “like a butterfly wing” and it makes human contact impossible unless she’s wearing bandages.
She must wear bandages at all times and cannot even hold hands with her mum, Anna, as any friction can cause her delicate skin to flare up.
Even eating is a painful process for the brave little girl, as the inside of her throat is covered in blisters.
Her feet have never been out of bandages and her torso and elbows are also wrapped in protective fabric, which has to be changed every day.
Anna said: “As soon as I fell pregnant the second time you map out your life and imagine how it’s going to be.
“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.”
The Reception pupil was the second child of Anna and husband Iain, whose other daughter Amelia was born seven years ago.
The couple provide regular medical care at home in Leonard Stanley, Glos, to ensure Jasmine has a good quality of life.
Anna 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.”
Jasmine has already had three operations on her throat to make eating less uncomfortable, and her proud mum said: “I just don’t know how she eats. She’s very resilient.”
The family have been forced to adapt to Jasmine’s needs, and Anna added: “When she was a baby you had to cuddle her with a pillow.
“There have been instances when children wouldn’t go near here. But she’s very strong willed and got a strong personality.
“We have adapted so much to it, we’ve had to change our garden for instance, to remove steps.”
Jasmine’s family live in hope that a cure will be found for the devastating condition, which is believed to effect only 5,000 people in the UK.
Anna 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.
“Every day she shows us that she’s not giving up, so neither will we,”
She added: “We will hold the hope that they will find the cure in her lifetime. She’s bravest little butterfly I know.”
Anna and old pal Julie Crews will be taking on a 100-mile charity walk in a bid to raise funds for a charity which supports families such as theirs, and carries out research into the condition, DEBRA.
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.
Anna 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 Anna’s fundraising walk visit her Blisters4Butterflies www.justgiving.com/fundraising/blisters4butterflies
