A bitter fact had to be accepted by Alisa when the doctor told her parents that Alisa was diagnosed with Herlitz Junctional Epidermolysis Bullosa (EB) which only affects one in a million children in the world. As revealed by the mother Lee (33), that she and her husband worked hard to look after Alisa, even she had to be very careful with her child’s fragile skin, until they never dared touch her beloved daughter’s skin. But even so, tough again, Alisa never complained and whined in pain and she kept trying to be normal like a child in general, said the mother.
To his worst, the condition caused the skin on his son’s left knee to peel off which made him unable to straighten his legs, he added. Even when walking, Alisa has difficulty because her toes are starting to fuse. For this reason, the boy who lives in Dartford, Kent in England requires surgery as soon as possible to separate his fingers. In addition, the pain was getting more inflamed because the skin on her legs had disappeared and was blistered, especially when the princess was about to sit down, it would make her daughter scream in pain.
As if it wasn’t enough, wounds often appeared in the mouth of this boy so that Alisa could only eat soft food. However, because Alisa is also not allowed to consume too many calories so that her body does not recover, Alisa only eats through a gastrotomy tube that is attached to her stomach at night. But even so, it does not mean that Alisa is not given love by her parents, on the contrary, this beautiful boy is so showered with the attention and affection of both parents and the people around him. Lee himself, the mother, admitted that he took full care of his daughter and to replace her daughter’s bandages, he spent 1.5 hours every day.
Lee and Joe (43), Alisa’s parents, have realized that something different is happening with the youngest daughter of the four siblings. Alisa was born with skin that is so pink and a few days later she was diagnosed with EB disease. Actually, this disease can be very risky if it occurs in the fetus, but luckily Alisa is a baby with a good prognosis that makes her survive. Most children who suffer from Junctional Epidermolysis Bullosa will have blisters on their skin. Likewise with the mouth and digestive tract so they will have difficulty eating. With many blisters, these EB sufferers will be very susceptible to infection and other serious diseases. Other symptoms are respiratory problems, fingers and toes that begin to fuse, limitation of movement to hair that starts to fall out.