Samira Abdul Aziz, 41, from Khan Yunis in the southern Gaza Strip, fears she will miss the opportunity to see her children grow up and graduate from university. All three are haunted by a rare type of kidney disorder called glycogen storage disease.
In 1997, Samira married her cousin Yasser, 44. She gave birth to three boys during the first four years of marriage and, unfortunately, all of them died because of the same illness. The first, Hassan, died after one month; the second, Mohammad, died at the age of one-and-a-half; and the third, Hassan junior, died at the age of 10, six years ago.
Now, the couple are left with three boys: Usama, 13; Hassan, 6; and Ahmad, 4. All of them are inflicted with the same disease as their deceased siblings.
Samira struggles to keep her children alive. Both parents take turns in attending to their needs. During the day, Yasser stays with the kids to give them their medicine, costing 600 shekels a month (around US$170). “I cannot leave them for a minute, so I don’t have time for job hunting,” he says.
Samira takes over the night shift. “We are in dire need of a solution to this illness. I cannot sit here one more minute waiting for another child to die, particularly Usama, who is now 13 years old.”
Another major challenge the couple faces is the continuous power cuts afflicting Gaza. The three kids need ventilators to help them to breathe.
When the power goes out, Samira must carry her three children to the hospital, which is far from her residence, to connect them to ventilators. “In those moments, I fear one of my children is going to die. I hold my breath whenever the power goes out,” she says.
The couple are desperate to find support so that their children can travel abroad to seek treatment.
“My children have the right to live normally like other children. I only wish to enjoy the bliss of motherhood like all the other moms do…their joy watching their kids grow, one step at a time,” she says.