On May 11, Dan Cohen reported on how the the Najjar family is one of many families in the Gaza village of Khuza’a are being forced to live in shipping containers because reconstruction has not yet begun following last summer’s Israeli assault. Here is a follow-up on one member of the Najjar family who is not able to receive medicine due to the siege on Gaza.
Two-and-a-half-year-old Ahmad Najjar’s condition is a result of Phenylketonuria (PKU), a hereditary disease that causes phenylalanine to build up in the body that can inhibit mental and physical development. He is one of 700 children in the Gaza Strip who suffer from this disorder.
PKU can have dire consequences if left untreated. Ahmad Najjar’s 15-year-old cousin, who has the same name, and his younger brother, Rayan, 2, are both afflicted with the disease. 15-year-old Ahmad was never treated and PKU has stunted his mental and physical development.
Ahmad’s mother, Um Ahmad Najjar, described the difficulties of raising a son with PKU in Gaza’s conservative culture where such cases are often seen as a source of shame. “In this society people treat them like they are awkward. If he wants to play outside, people treat him like he has a special disease and they don’t play with him — as if he’s not a normal child,” she said as held back tears.
The everyday struggles of caring for a PKU child were drastically exacerbated by Israel’s war on Gaza last summer. Unable to contain her grief, she sobbed as she recalled the desperation they experienced. “We couldn’t find anything for the kids to eat. During the war, we were staying with another family and they couldn’t feed my children. They were asking me to give the children food and I had to explain the situation. I just want to give them the food and milk that they need – to live like any other child.”
The disease is easily treatable in wealthy countries — PKU requires a medical formula that is often in the form of milk as well as a carefully planned diet — but in the Gaza Strip, where 80% of the regular diet is detrimental to PKU patients, this formula is impossible to find. Under the current economic devastation, formula is too costly to import at a minimum of $300 dollars per month per patient. The formula used to be available, but the Israeli/Egyptian siege has suffocated the economy, rendering it simply out of reach for Palestinians in Gaza.
In 2013, volunteers founded the Brilliant Future Association (BFA), a group which aims to serve children suffering from genetic diseases throughout the Gaza Strip by purchasing treatment supplies from abroad and developing a local food production unit. Additionally, the association raises awareness that marriage between relative is the cause of 85% of PKU cases.
According to Akram Asfour, co-founder of BFA, no treatment formula has been imported into Gaza for ten months. Even when the rare bit of formula was brought it before, it was often expired.
Another issue BFA hopes to address is the lack of testing center in Gaza. Eyad Najjar’s two children, Asseel, 9, and Zain el dein, 6, were diagnosed with PKU at an early age and received treatment allowing them to develop normally. Now, Najjar’s wife is pregnant. They hope to test the fetus for PKU but Israel and Egypt’s policies of collective punishment prevent them from traveling abroad to do so.
But with no funding, BFA hasn’t been able to provide much to the families. They are currently in stages of fundraising but have had little success. For now, they have set up a bank account to receive donations.
To donate to Brilliant Future Association, use the following information:
BANK OF PALESTINE P.L.C
BRANCH NAME: KHANYOUNIS
SWIFT CODE: PALSPS22
Correspondent for UDS is JP Morgan Chase
Swift Code: CHASUS33
Correspondent for GBP is HSBC Bank plc
Swift Code: MIDLGB22
Correspondent Bank for EUR is CommerzBank
Swift Code: CODADEFF
Deutsch Bank Swift Code: DEUTDEEF