The heavy rain doused the aluminum-roofed shack. Rivulets carved paths through the thick mud around the house. But inside, the house was cozy, comfortable. Thick carpets and bouncy velvet couches make this hard Palestinian life easier.
Because life is hard here. This woman has three children and all three of them are disabled with Berardinelli Lipodystrophy, a mysterious blood disorder. I read the long name of the disorder printed out on her oldest child’s diagnosis summary from the Caritas Children’s Hospital. She says her husband has a problem in his sperm and they found out too late. The children are supposed to drink Ensure twice a day but a case of it is 12 shekels ($3.50), which lasts three days and which she cannot afford regularly. They try to compromise with Pedicure but it isn’t as good.
She has her oldest boy, 14 years old, show us his deformed leg muscle. He stares at the ground in shame, covering his eyes. I know his mother is embarrassed for him but she is desperate for help. Maybe we can help her? We can see on first sight that the three boys are not right, even the littlest, who at 4 years old looks either like an infant or like a middle-aged man, so shrunken are his cheeks and so boxy are his shoulders.
She has appealed to the Palestinian Ministry of Health for help. She awaits an answer. I gather she has very few resources.
For years she cried and cried. She always gives thanks to Allah for this test she is undergoing. “I can’t do anything. So I just thank God. What else can I do?”
The middle boy, almost blind with thick glasses, asks his mother if they can offer us coffee or tea. She giggles apologetically. But we defer. We don’t want her to spare any resources.
I remember I have American Halloween candy in my backpack and ask if I can give her children some Twix. They scatter with the chocolate and she quietly tells us that the doctor has said none of them will live past 15. Their livers will start to fail and they will develop diabetes, and then their kidneys will fail and they will die. Her eldest son will not see more than another year. She says all this with an eery cheer, like she had cried so much she has burned through her sorrow.
We stay with her until the rain starts to thin. I cradle the littlest child as he finishes his mini-Twix. Never has a mini-Twix been savored by a 4-year-old for fifteen minutes. She has never met an American and she is smiling broadly. It is time for us to go and we fish money out of our wallets, knowing we cannot really help her. Her eyes fill with tears and she thanks us again and again.
We drive to visit a different family, living in a house that was rebuilt by a Palestinian NGO after the previous one was razed by Israeli bulldozers. Their kids run in circles, high on the Halloween candy I gave them. The parents tell us they know about this woman and her three sick children, because they are cousins of her husband. But they also know something the woman doesn’t know. They know that her husband has been stricken with prostate cancer and will also die soon, and she will be left without her entire family.
Image courtesy of Wikimedia Commons.