Young Kayla Grant lives with EB. Her skin is so fragile that 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 causes Epidermolysis Bullosa, or EB. When Kayla was born, she seemed healthy but 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 and EB was diagnosed.
We were told not to look up EB on the internet because it would frighten us too much but I couldn't help myself. When I saw how it affected people I thought, God help us.
We were told Kayla's skin cells were damaged and there was no cure. Just cuddling or holding her caused her skin to blister and it got worse as she began trying to walk. Sometimes she would scream in agony. She never crawled because it hurt so much.
Blisters form everywhere: under her hair, in her ears and her mouth. Kayla couldn't even breastfeed - skin broke off 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 still starts with me lancing blisters formed overnight and cutting away dead skin from healing wounds, so they don't become infected. Kayla takes morphine or a milder pain killer.
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.
The children at school are fantastic. Older ones were shown a video about EB, while Kayla has explained to the younger ones that she is very fragile, like a butterfly.
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 cannot have anything like crisps - she will normally have soup, yogurt and soft fruits such as bananas.
I don't think I will 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. We hope that a cure will be found one day, but we have been told that it will be another three years before clinical trials can begin.
