'We're determined to give her the best life possible'

Kayla Grant isa child withepidermolysis bullosa (EB). Her skin is so fragile she cannot be hugged. Her friends and family call her the butterfly girl, because her skin is as fragile as a butterfly wing. Her mother Brenda talks about their lives.

"My husband Paul and I had no idea that we both carry the gene that causesEB. When Kayla was born, she seemed healthy except for a few tiny blisters on her thumb and heel.

"When doctors checked her heart, I was horrified as they pulled the monitor pads off her body because skin came away. She was in and out of hospital for three months to try to find what was wrong. Eventually we went to Great Ormond Street,where our baby was diagnosed withEB.

"We were told Kayla's skin cells were damaged and there was no cure. Just cuddling or holding her caused her skin to blister.Itgot worse as she began trying to walk. Sometimes she would scream in agony. She never crawled because it would hurt herso much.

"Blisters form everywhere: under her hair, in her ears and her mouth. I became frightened to pick her up and dreaded having to get her dressed. In the beginning I think she resented me because I hurt her and I felt very guilty, but now she knows I am trying to help.

"Buying clothes is a nightmare because the fabric and seams rub against her skin. I have to modify almost everything she wears by cutting away tight cuffs and collars and she has a vest made from a soft bandage-like fabric. She has shoes because she wants to be like other little girls, but has to wear slippers most of the time.

"She sleeps in silk or Egyptian cotton sheets, which cause less friction. But every day I still have to lance the blisters that have formed overnight and cut away dead skin from the wounds that are healing, so that they don't become infected. Kayla takes morphine or a milder painkiller.

"We want her to have a normal life and experience the same things as other children as much as possible. I bind her hands and feet with bandages to save them from knocks and we allow her to run around and play on a slide, even though it can end up causing her pain.

"She loves swimming and we have a paddling pool in the garden, but she will never be able to play sports like tennis.

"It would be so easy to try to shield her but that would harm her. We want her to be in control of her own life and learn what she is capable of doing.

"She has a full-time carer and attends normal lessons, but even holding a pencil is sometimes too painful for her. Eating is a problem because blisters develop inside her mouth. She can't have anything like crisps. She'll normally have soup, yogurt and soft fruits such as bananas.

"I don't think I'll ever come to terms with seeing her in so much pain. We can't have a normal life and holidays are difficult. We took Kayla to Mauritius once but she had to fly home because the hot climate made her condition worse.

"Sometimes she gets very frustrated. The other night she had blisters on her ear and couldn't sleep. Despite all this, she has a wonderful sense of humour.

"Her older sister, Alana, who is eight and fortunately doesn't have EB, is great with Kayla. She sits reading with her for hours.

"We know that there will be health risks as Kayla gets older but we're determined to give her the best life possible."

Content supplied by the NHS Website

Medically Reviewed by a doctor on 24 Nov 2016