Girl whose skin blisters at the slightest touch Alisa Doanvan has Herlitz junctional epidermolysis bullosa which causes her skin to break out in painful sores when it is touched She is at risk of a potentially deadly infection because of the sores Her body is covered in scabs and sores and she cannot play with her friends at school for fear she will do more damage to her fragile skin Her toes are fusing together because they have blistered and then re-healed so many times - she will need surgery to separate them Her mouth also blisters so she has to stick to a soft food diet Her parents spend an hour and a half a day changing her bandages A little girl can never have a cuddle from her mother because a rare condition means she breaks out in painful sores at the slightest touch. Alisa Doanvan, five, is at risk of a potentially deadly infection because of the disorder but still attends school despite not being able to join in many playground games. Just one cuddle from her mother, Lee, 33, can leave Alisa with painful sores and walking barefoot can see her skin flare up. Alisa Doanvan (pictured with her parents, Joe and Lee) has a rare skin condition which means her skin blisters and develops painful sores at the slightest touch Alisa suffers from Herlitz junctional epidermolysis bullosa (EB) which affects less than one child in a million. Her mother, from Dartford, Kent, said: "It's awful seeing Alisa in so much pain, we have to be so careful with her, even a simple cuddle is impossible as she sometimes has blisters on her back. Despite having such a painful condition she never moans and still tries to do everything like a normal little girl. Alisa's condition means she has scabs and sores all over her body and is unable to do some things as its too dangerous - such as playing with her friends in the playground. Alisa currently has no skin on her left knee so she's unable to straighten it. Alisa is forced to run on the balls of her feet as her toes have started to fuse together where the skin has shed and healed so many times - she will need an operation to separate them. Alisa's body is covered in painful sores and she has to use a wheelchair as the blisters make it too painful for her to walk far Alisa suffers from Herlitz junctional epidermolysis bullosa (EB) which affects less than one child in a million Blisters also form easily inside her mouth so she has to stick to a soft food diet. She can't physically eat enough calories each day to aid her constantly healing body, so she is fed via a gastrostomy button in her tummy during the night. Her mother is her full time carer and faces the gruelling task of changing her bandages every day - it takes an hour and a half and is very painful. She said: "Alisa will try and do as much as she can but easy movements are often painful for Alisa. Even walking is painful - her skin shears away and causes blisters - sitting down is equally bad. Alisa's mother said: 'It's awful seeing Alisa in so much pain, we have to be so careful with her, even a simple cuddle is impossible as she sometimes has blisters on her back' Alisa is forced to run on the balls of her feet as her toes have started to fuse together where the skin has shed and healed so many times - she will need an operation to separate them When Alisa was born, the youngest of four sisters, her parents Joe and Lee knew immediately there was something wrong with her angry, pink skin. Alisa was diagnosed only a few days after birth - and she was suffering from the most severe type of EB - it can be fatal in infancy but luckily a better prognosis followed. Her mother said: "Her skin was so sore when she was first born - we had no idea what was wrong with Alisa or how serious her condition was - thankfully her skin condition slightly improved and we were able to take her home." Her father, Joe, 43, said: "We have to be very careful around Alisa as even cuddling her can cause severe blisters and can completely tear the skin off." The Doanvan family are supported by the Debra charity - they have specialist EB nurses who have assisted them from the moment Alisa was born. Alisa uses a wheelchair at school to give her independence, allowing her to move safely around. Alisa's father, Joe, 43, said: "We have to be very careful around Alisa as even cuddling her can cause severe blisters and can completely tear the skin off" Ben Merrett, Debra Chief Executive said: "Imagine a baby in terrible pain. Think about a parent having endless rounds of changing dressings, lancing blisters and cleaning the open wounds that develop all over their child's body. This is the reality faced by many families affected by EB who often lose their child after years of fighting this devastating condition. Debra is the only national organisation which offers specialist care and support to people and families affected by the condition and provides real hope for the future by funding pioneering research to find effective treatments for EB. Junctional epidermolysis bullosa is one of the forms of epidermolysis bullosa - a group of genetic conditions that cause the skin to be fragile and easily damaged. Junctional epidermolysis bullosa is divided into two main types - Herlitz junctional epidermolysis bullosa and non-Herlitz junctional epidermolysis bullosa. The features of each type are similar but Herlitz junctional epidermolysis bullosa is more severe. From birth affected children have blistering over large parts of their bodies. They also experience blistering in their mouth and digestive tract which can make eating difficult. The sores make affected children susceptible to severe infections. The condition can also cause breathing difficulties if it impacts the airways, and fusion of the fingers and toes. It can also cause restricted movement and hair loss. Infants with the condition usually do not survive beyond their first year. Herlitz junctional epidermolysis bullosa affects less than one child per million.