Jihan a-Shanti, mother of four

I live with my husband, Ashraf a-Shanti, and our four children: Ghaida', 11, Maysa', 8, Muhammad, two and a half, and Mustafa, who is 16 months old.

Ever since I got married, in 1995, I dreamt of having children and living happily with them and my husband. During our first years of marriage, we had two daughters. I dreamt of having sons also. In 2000, Muhammad was born. I was very happy that I had given birth to a son, but my joy quickly disappeared. Muhammad was sick all the time, and we didn't know what the problem was. After spending much time in the hospital, he died. He was only three months old. We later learned that he had a disease called cystic fibrosis. The doctors in Gaza didn't diagnose the disease, so he didn't get the proper treatment and died.

Muhammad's death came as a shock and I became depressed. I prayed to Allah for a healthy child and a normal life. In 2005, I gave birth to a son and I gave him the same name, Muhammad. I prayed that he would compensate me for my first son. I thanked Allah for my son and felt very content, but that feeling did not last long. Three days after he was born, his skin turned very yellow. We took him many times to doctors before they discovered that he, too, had cystic fibrosis. That was when our great suffering began. We focused only on caring for Muhammad. We spent a lot of time trying to get permits to enter Israel so we could take him to Hadassah Hospital . After each treatment there, we continued to care for Muhammad at home.

Jihan A-Shanti caring for her son Muhammad . photo: Muhammad Sabah, B'Tselem.

About a year and a half ago, we had another son, Mustafa, and the doctors found that he, too, had the disease. Since then, my husband and I have had our hands full taking the children to Hadassah Hospital and caring for them at home.

Getting a permit to enter Israel is an exhausting process. From the moment we submit the request until we get the authorization, we are constantly tense. We have to wait a long time to get each permit, and our requests are often rejected. Our children's lives depend on these permits. Once the permit arrives, we go to Erez Crossing and wait hours until we cross and continue on our way to Hadassah Hospital , in Jerusalem . Also, it is very expensive to make the trip.

Cystic fibrosis patients need treatment around the clock. Every six hours, more or less, I give them physiotherapy, and every three hours, Ventolin, which they inhale. Sometimes, when they are very short of breath, they need Ventolin treatment every hour, or even more often. They also have to be hooked up to oxygen four to six times a day. One hour after they receive the Ventolin, they inhale antibiotics.

Their diet is special, and they have to eat at certain hours of the day. Six times a day, they receive 150 cubic centimeters of Nutran, which is enriched milk. This is in addition to the regular food. Four times a day, they also receive a special food product called Buclus.

Twice a day they take Zantec for their stomach, and Vitamins A, D, E, and K.

All this means that I have to treat the children every half an hour or so throughout the day. I don't do anything else. I don't go out for recreation, I almost never visit relatives, and I don't take part in family events. I can't leave the children without care and supervision. Since Muhammad was born, my husband and I have not gone out together even once.

Staying in the house is also hard. We live as if we are in prison. The doctors told us not to open the windows, but to use the air conditioner, so that the boys won't be exposed to polluted air and dust. Smoking is forbidden in the house, and I have to disinfect the house daily. I feel as if I am in a hospital and not in a home.

I am in terrible shape emotionally. As long as my children are sick, I'll continue to suffer and live this way.

The children had an appointment at Hadassah scheduled for 15 October, and we didn't get the permit in time. It still hasn't come.

Jihan Mahmoud Saleh a-Shanti, 34, married with four children is a homemaker and a resident of Gaza City. Her testimony was given to Muhammad Sabah at the witness’s home on 10 November 2007.