From the day after his birth, Lung-lung's skin continually had blisters. He struggled every moment with the pain. How could he start his life like this? Furthermore, his parents were a young couple who had come from unfortunate backgrounds and had led very difficult lives. They could hardly take care of themselves. How could they raise a child like this? Fortunately, Tzu Chi Hospital has set up a Home Care Planning Team to encourage patients to receive care at home.

A Rare Disease

Lung-lung was barely two months old when his father took him to Tzu Chi Hospital. On the day after his birth at a private clinic, his skin developed large and small blisters. The doctor had wanted to transfer him to Tzu Chi Hospital, but since no beds were available there, the boy was transferred to the Veterans General Hospital in Taipei. There, the doctor diagnosed his disease as congenital epidermolytic bullosa, an extremely rare, one-in-a-million disease.

This disease is caused by a congenital gene defect. Those who suffer this disease develop large blisters on their skin at irregular times and places. If the blisters are not broken, they continue to grow larger. Even more serious, the outer and inner layers of skin do not adhere to each other. Thus, if the patient's clothes are somewhat coarse and rub against the skin, the outer layer of skin will fall off, exposing the underlying muscle. The skin does not grow back. Sadly, even though medical science at the end of the 20th century had become so advanced, doctors can still do nothing about this disease.

In Taipei, Lung-lung's parents spent all their savings on medical expenses, and they still owed the hospital hundreds of thousands of dollars. They had no choice but to take Lung-lung back to Hualien. When they finally got to Tzu Chi Hospital, the boy's situation had become critical. The emergency room quickly transferred Lung-lung to the pediatric intensive care unit, and the staff there immediately went to work.

When they took off the boy's clothes, the blisters were spread not only over his scalp, face, and limbs, but even in his mouth (buccal mucosa). Larger blisters measured up to 5x7 cm. Because the broken skin could not knit together and form scars, the contact of the pink muscle with the air resulted in unbearable pain. Seeing Lung-lung crying himself to exhaustion, we could only imagine how painful it was for him.

The staff carefully changed his dressings. He was so cute with his rosy cheeks and red lips, but the innocent expression and loud crying struck the nurses to the heart. Everyone there was in tears.

The Sad Parents

Lung-lung's father had just turned 20, so he was probably worried about the medical expenses. After he brought the boy to the hospital, he seldom showed up again. The Tzu Chi HCP team discussed how to take care of the little patient and how to care for his family. They referred the case to a volunteer who then visited Lung-lung's family.

When the volunteer first visited the family, she found that the father was an aborigine who made a living by doing odd jobs. "After the child was born and got this strange disease, I thought of just abandoning him," the father said helplessly. "But still he's my own flesh and blood, so I just couldn't do it. Every time I went to the hospital to see him, the more I saw him, the more I loved him. I just wanted to make him well." When he saw how diligently the Tzu Chi Hospital personnel and volunteers took care of his child, the father felt a great peace of mind.

When he found out that the child would have the blisters for the rest of his life, the expression on the young aborigine father's face showed worry and grief. At this time, the parents couldn't even feed themselves. The mother was only 14 years old. In most families, such a young girl would still need to be looked after by her own mother. How could she fulfill the role of mother herself?

As we understood it, the young mother's background was very rough. Her father was a gangster who would get drunk and beat people. Her mother couldn't take it anymore and ran away when the daughter was eight years old. Without the mother's support, the father became even worse. The four brothers and sisters lived each day under the shadow of fear and violence. Lung-lung's father couldn't bear to see the young girl sold by her father into prostitution, so he married her. They never thought that they would have a child like Lung-lung.

Maternal Love is Natural

When the volunteer reported the results of her visit to the HCP team, the team called a special meeting. They decided that they would not only treat Lung-lung, but they would also guide his parents to accept reality and shoulder the responsibility of parenthood.

Having struggled on the edge of life and death, Lung-lung was finally transferred from the ICU to a regular ward to try to let his skin get used to the outside air and environment.

With the efforts of the HCP team, the young mother's visits to the hospital increased. Maternal love is natural. One day, she wanted to hold her child, but she didn't know how. Volunteer Ming-yueh demonstrated for her and talked to the baby. Lung-lung was very smart: if you tickled him, he would open his eyes wide and smile. Ming-yueh told the mother to pat him gently and make him feel safe. The mother immediately learned how to do it. When the nurse came to change the dressings, the young mother watched and quickly learned how to do the bandages. The next time she came, she expertly changed the dressings herself. Lung-lung babbled happily.

Life's Long Journey

Finally, Lung-lung's condition was stable enough that he could leave the hospital, but his parents were still unable to raise him. The HCP team found a children's nursing home for Lung-lung. A public health nurse went to the home two or three times a month and showed the staff how to wash Lung-lung, change his dressings and do rehabilitation.

The bathing process was very complicated. First, the blisters on Lung-lung's skin had to be broken. After the fluid from the blisters was drained, antibiotic ointment and bandages were applied. At this time, Lung-lung looked like a mummy. The worst was in summer. His perspiration was affected and the bandages wouldn't let air through, so Lung-lung endured unspeakable suffering.

Because his situation was complicated with skin and respiratory system infections, Lung-lung went back to Tzu Chi Hospital for treatment. He was the darling of the nurses and volunteers. They not only loved him, but also cared about his parents and helped his father find a job.

On his long journey of life, we hope that Lung-lung will never be lonely and will grow up peacefully.

Epilogue

In September 1995, when Lung-lung celebrated his second birthday, the public health nurses and volunteers took a big birthday cake to the nursing home for him. Lung-lung was so smart, lively and lovable, and many people felt sorry for him. Since his skin still formed blisters at irregular intervals, he needed to be cared for carefully, or else he would get infections. Again and again, the peeling skin was painful for him. How could such a small child take it? He could only express his pain with loud cries. All who cared for him felt helpless.

Trying to alleviate Lung-lung's pain, the kind staff at the nursing home did not use bandages, but just waited for the wounds to dry up. In summer, the staff let Lung-lung run around naked. Fortunately, the child's vitality was very strong. The blisters still continually appeared and his skin continued to peel off, but from his pain he chose a less painful way to live on.

Due to her youth and ignorance, Lung-lung's poor mother ran away from the family. The HCP team had not only cared for Lung-lung but also for the mother, continually giving her spiritual and material support, but her painful background made her like a frightened bird. The roles of mother and wife were too much for her to bear.