Two-and-a-half year old Muhammad a-Shanti and his brother Mustafa, who is sixteen months old, have cystic fibrosis. They live in the Gaza Strip, where the health system is unable to treat their serious illness. As a result, they must go to Hadassah Hospital , in Jerusalem , once a month for treatment. Prior to each visit, their parents have to submit a request for an entry permit for one of them and for the toddlers. Now and in the past, Israel has taken its time in issuing the permits. The delays have severely increased in the past six months.

Muhammad and Mustafa a-Shanti. Photo: Muhammad Sabah, B'Tselem.

Since Hamas took control of the Gaza Strip in June 2007, Israel has almost completely prohibited Gazans to enter Israel or go abroad for medical treatment. The last time the children were treated at Hadassah was in September. Since then, Israel has not permitted them to enter its territory, and the toddlers' condition has deteriorated.

Ashraf a-Shanti, government clerk

I was born in Jordan to a father from the Gaza Strip. In 1994, I came to Gaza on a visitor's permit that my uncle obtained for me. In 1995, my fiancée also entered Gaza on a visitor's permit and we got married. At the time, we thought we would be able to obtain Palestinian identity cards. I worked in the office of the Palestinian Naval Police. In 1996, our first child was born, a daughter, whom we named Ghaida', and in 1998, our daughter Maysa' was born.

In 2000, our first son, Muhammad, was born. Ten days after he was born, we noticed that his skin was yellow, so we took him to a-Shifa'a Hospital, in Gaza , for an examination. The doctors said that we should wait and that the yellow skin color would go away on its own, but that didn't happen. We took him back for more tests and the doctors said we had to take him to Ramallah for a C.T., because there was no place in Gaza to do it.

I requested a permit to go to Ramallah for Muhammad and me, but the Israelis did not grant it. In the end, the doctors at a-Shifa'a operated on his gall bladder, because they thought that was where the problem was. Two weeks later, Muhammad died. We then learned that he had had cystic fibrosis and that the doctors in Gaza had been unable to diagnose it. He died because he did not receive the right treatment. Muhammad's illness and death were the worst things that ever happened to me.

In 2005, we had another son and we gave him the same name, Muhammad. He too was born with cystic fibrosis, and this time the doctors diagnosed it. At birth, he was kept in an incubator for ten days and was then taken to the children's hospital in Gaza , where he remained for about 2 ½ months. The illness affected almost every system in his body.

We searched the Internet for information on treating the disease and found out that Prof. Kerem, from Hadassah Hospital in Jerusalem , specialized in CF. I wrote to Hadassah and within 24 hours, they called me on my cell phone and told me to send them Muhammad's medical records. I sent them immediately and told the hospital that I didn't have a Palestinian identity card. That same day, somebody from Physicians for Human Rights in Israel called and said they would help Muhammad and my wife get a permit to enter Israel , so that Muhammad could be treated at Hadassah. Officials from the Palestinian Authority's liaison office said that the permit was granted in principle, and that we needed to file a request.

I did all the necessary paperwork and submitted the request via the PA's health coordinator, Ahmad Abu Ghazeh. After waiting about two months, the Israeli side said that my wife and I would not be given a permit because we did not have a Palestinian ID. One of my aunts managed to get a permit and in August 2005, she went with Muhammad to Hadassah and stayed with him for 45 days straight. During that period, I was extremely tense. My wife and daughters cried all the time, worrying about Muhammad. I called my aunt more than six times a day and asked how he was. After having lost my first son, in 2000, I was very worried that I might also lose my second son.

After Muhammad received the treatment, he and my aunt returned to Gaza . The doctors from Hadassah said that he had to return to Hadassah once a month for treatment and follow-up, but my aunt couldn't continue going with him. In November 2005, after the Red Cross, Physicians for Human Rights, and the Palestinian Health Ministry intervened, the Israelis agreed to give my wife a permit to enter Israel so that she could accompany Muhammad.

In December, the Israelis refused once again to give my wife a permit and there was nobody to accompany Muhammad, so he didn't get the treatment. In January 2006, my wife managed to get a permit and she went with Muhammad to Hadassah for treatment that lasted three days. Getting a permit each time involved lots of hardship.

In July 2006, my wife gave birth to another son, Mustafa. The doctors in Gaza thought he was born healthy, and it took my wife a year to get a permit to take the two boys for tests in Israel . Then we learned that Mustafa had CF too. The two boys received treatment for one week, and then my wife brought them back to Gaza .

On 13 September 2007, I received a permit to take the children to Hadassah. I took them there for treatment that lasted 21 days. The doctors at Hadassah told us to bring the children back again in October. but now the Israelis are refusing to grant me an entry permit. The children need to receive regular treatment once a month and every delay is harmful. My wife and I are constantly on edge, waiting for the permit to come. Our children's lives depend on it.

Ashraf Fathi Hussein a-Shanti, 39, married with four children, is a government clerk and a resident of Gaza City. His testimony was given to Muhammad Sabah at the witness’s home on 17 October 2007.

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.