Daisy May's story

''Daisy often asks: ‘Why do I have blisters Mummy?'. Our standard answer of ‘because you are special Daisy' is not good enough now she is approaching her fifth birthday, but what else can we say?" Veronica and Michael Pearson.

Five year old Daisy, pictured here with brother Joseph, finds it difficult to understand why blisters appear on her skin every day, why she is in so much pain, and why her parents and all the doctors and nurses can't make her better.

Daisy has an incurable genetic skin condition called Epidermolysis Bullosa (EB) which causes blistering and sores to appear on her skin at the slightest touch - or even spontaneously. There is currently no cure or effective treatment for EB and the condition is always painful, frequently very disabling and can be life threatening.

The blisters started to appear on Daisy's skin when she was three months old but her family thought they were caused by her delicate skin being rubbed by her clothes. When blisters formed on her hands, her parents took her to a skin specialist at a local hospital, but even then the symptoms of EB were confused with a minor skin condition and possibly an allergy to the family's cat.

When the blistering continued, EB was mentioned to the family as a probable cause and eventually they were put in touch with a specialist DebRA EB nurse who confirmed that Daisy had this rare and painful condition. The nurse explained that bursting Daisy's blisters was important to stop them growing bigger and to stop infections, and how they should use special creams and bandages to cover the raw skin.

Daisy's father Michael continues their story: "As the nurse burst the big blister which had formed on Daisy's hand, she screamed and cried and we realised that this is what everyday life would now become.

"But at least now we knew what was wrong with Daisy and our DebRA EB nurse, Lesley Foster, understood what we were going through. Lesley is based at Great Ormond Street Hosptal and we live in Norfolk, but she is always on the end of the phone if we need her. Lesley requested an appointment for us with a specialist in London who told us which type of EB Simplex Daisy has, EB Simplex Kobner.

"The specialist said how lucky it was that we were living near the coast and advised taking her for a paddle in the sea, as the salt water would help keep infection away. The mention of sea and salt water brought back memories of Daisy's Grandma picking fresh seaweed and boiling it to make a bath for her father who had a nasty wound which would not heal. So now we do the same for Daisy - she has a sea water footbath every day and it does help to stop infections.

"Our family life has changed since we've had Daisy, many hours are taken just by making Daisy comfortable. Sometimes we have to abandon days out because Daisy is just not well enough to go. There are lots of dressings and creams which Daisy uses at different stages, such as when the blisters are first appearing to when the skin is red raw, to when the skin hardens into scabs.

"Daisy started school in September 2009. It's been a difficult learning curve for both us and the school. A DebRA specialist nurse visited the school to explain EB and help them understand Daisy's needs. A teaching assistant has been helping Daisy during the day, they go to the library instead of the playground during breaks and she helps with footbaths, changing socks and dressings. However, cut backs mean she was made redundant, so we'll have to start again with someone else and hope they will be just as kind.

"We have had feelings of sadness, feelings of guilt, we've questioned why it should happen, as we had not even heard of EB until Daisy was diagnosed. But we now say it must have happened for a reason, and Daisy makes life even more special. We try and make her life as normal as possible, and her older brother Joseph, who does not have EB, inspires her to do things we are sure she would never try without him."

"We are always busy raising money for the DebRA and have met some lovely people. We often get asked questions about Daisy's condition when we are on the beach picking seaweed and we always keep a DebRA leaflet in our pockets, people are fascinated! It's always good to spread the word, you never know if you are going to be faced with EB somewhere in your family."