Heartbroken mum cannot cuddle her two-year-old because lightest touch causes toddler's skin to violently blister

Any exposure to light or heat, or the simplest touch, can bring her skin out in blisters.

A young mum says it "breaks her heart" that she cannot cuddle her two-year-old who was born with a rare condition that left her skin as fragile as butterfly wings.

Tia Price, from Hemel Hempstead, Hertfordshire, suffers from a disease called epidermolysis bullosa, also known as Butterfly Syndrome, which causes skin to fall off at the slightest touch.

Just to pick her up or for her to go out into the sunlight can cause her skin to violently blister.


Mum Annemarie, 22, has to delicately pick her up but any contact can be painful for little Tia.

Annemarie said: "I have to be extremely careful.

“She can’t be picked up from her arms because it will tear her skin.

“She loves sitting on my knee and we can hug her but we have to be delicate.”

Every morning the dressing on Tia's legs , feet arms and back have to be changed and Annemarie checks her over for blisters.

She said: "She cries and tells me to stop when I try to change her soiled dressings.
“It breaks my heart to hurt her when she is already in pain.

“When I’m finished I make sure I tell her that mummy is sorry, that she has to do it and loves her very much.

“If she’s had any exposure to the sun it’s even worse because it causes her skin to dry up or blister.

"If there is any I have to pop them. It’s so horrible but if I don’t then they just get bigger.


Tia was also born with gastroschisis, so her intestines were on the outside of her stomach.

Miss Price said: “At my 20-week scan they could tell her intestines had formed outside of her stomach, so it was arranged for me to give birth at University College Hospital.

“Straight-away when she was born she was whisked away for surgery to Great Ormond Street children’s hospital, in London.

“I only saw her briefly to say goodbye, but I could see she had no skin on her legs, feet and on parts of her tiny hands.”

“I didn’t know what was wrong with her.

“She was in the incubator and I could only touch her gently.

“She was two weeks when I could finally hold her. It was magical but I was so scared for her.”

She was kept in hospital for the first six months on a drip and ventilator.

When Tia became strong enough to go home, Miss Price had to learn how to look after her own baby.
She said: “Every morning I had to do her dressings and inspect her skin.

“I syringe morphine into her mouth twice a day and she has ibuprofen and paracetamol too for the pain.

“At the beginning it was so strange not being able to just pick her and cuddle her.

Miss Price gives Tia as much as a normal life as possible, taking her to a special needs play group twice a week.

She said: “I have kittens when we go because she’s so fragile. One of the children held onto her hand and wouldn’t let go.

“But Tia loves it. She just wants to be a normal little girl.”

(Daily Mirror)