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Siege on Gaza prevents children from receiving needed medical formula

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.

Um Ahmad Najjar and her two sons Rayan and Ahmad. (Photo: Dan Cohen)
Um Ahmad Najjar and her two sons Rayan and Ahmad. (Photo: Dan Cohen)

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.

Co-founder of Brilliant Future Association Akram Asfour. (Photo: Dan Cohen)
Co-founder of Brilliant Future Association Akram Asfour. (Photo: Dan Cohen)

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:

IBAN: PS60PALS045210563640993000000

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

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Thanks, Dan.

It is a crime that of seige and heartless indifference that “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.”

As you write, “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.” Foods that are detrimental to people with PKU in “wealthy countries” are also clearly labeled with warnings, and safe food, medications, and access to care (and wheelchairs!!!) are readily available.

But it is also true that in “wealthy countries”, conservative or not, “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,””. From what I have witnessed throughout my life, people everywhere can be very heartless to those that are developmentally challenged in any way. I’d bet that Palestinians are considerably kinder~ it’s just who they are!

Siege on Gaza prevents children from receiving needed medical formula

No. The siege is not an active subject. Zionist murderers are preventing children from surviving, within the framework of their planned genocide.

We need to be aware that the ongoing siege of Gaza is in direct violation of the cease fire agreement that Israel made with Hamas, and which Israel, as usual, violates with impunity.

This cannot be described as anything but a slow motion genocide. It’s absolutely disgusting.

Thanks Dan Cohen

Jackdaw, DoubleStandard, hophmi, JeffB, jon_s, catalan, yonah? Surely you can tell us why this amazing cruelty on the part of Israeli Jews is not what it seems? Palestinian families are trapped in Gaza, under Israeli siege. Tell us again about the “generosity” and “compassion” Israeli Jews demonstrate in treating “enemy” soldiers, and in aiding people in Nepal and Haiti. Tell us again that Palestinian children deserve to suffer because Gaza voted for Hamas.

PKU is a devastating condition that results in physical and mental disability and retardation unless the victim follows a diet extremely low in protein. http://www.mayoclinic.org/diseases-conditions/phenylketonuria/basics/treatment/con-20026275

“Because of the restricted diet, someone with PKU needs to get essential nutrition through a formula that’s a special nutritional supplement for people with PKU. The phenylalanine-free formula provides protein and other essential nutrients in a form that’s safe for people with PKU. Your doctor and dietitian can help you find the right type of formula.” http://www.mayoclinic.org/diseases-conditions/phenylketonuria/basics/treatment/con-20026275

People with PKU need regular medical and dietary follow-up. Except for Palestinians, under the Israeli Jewish jackboot.