By Maria Syed | Analyst and Strategist
Phenylketonuria (PKU) is an inherited metabolic disorder characterized by the inability of the body to process a part of a protein known as phenylalanine. When individuals with PKU consume phenylalanine, found in many common foods, it accumulates in their blood and can lead to severe neurological complications, including intellectual disability, if not managed properly. Management of PKU typically involves a strict, lifelong diet low in phenylalanine, supplemented by medical foods and specialized formulas to ensure nutritional needs are met without causing harm. Early diagnosis and treatment are crucial to preventing the harmful effects of the disorder.
Thank you for your unwavering dedication to this important cause. Your support has played a critical role in improving the lives of children with PKU by providing them with access to essential medical care, nutritional guidance, and educational materials designed specifically for their condition.
The situation in Gaza is a humanitarian crisis without precedent. Among those affected are children with PKU, who face their own set of challenges amid the turmoil. Frequent communication disruptions have made it challenging to reach families of children with PKU. We were able to get in touch with Chef Sanabel, a mother to two children with PKU and the host of the PKU Mommy Cooking Show, who shared her harrowing experiences with us.
“PKU patients need special flour. And this flour is no longer available in Gaza. Even before the war, I was facing a scarcity of these foodstuffs. I do not know what to feed my children.
Since the war started, the situation has become worse. There is no aid. We contacted multiple organizations to send the special [PKU] flour and food. Israeli forces refused to allow these things to enter Gaza.
It pains me to see my children suffering. Since the beginning of the war, they have not received any treatments or regular blood tests that are vital for their health.
Frankly, from the time I discovered that my children had this disease, I went on a research journey about this disease because it is rare in Gaza. I read about this disease and learned about their special needs.
The moment the Israeli forces attacked on October 7th, all the dreams and hopes that I had about my children growing up and living a normal life were destroyed.
So imagine my suffering and the suffering of all the mothers of the PKU children. These children do not receive any aid except a can of tuna or a can of meat, which they are already forbidden to eat. Forbidden!
Even vegetables and fruits. Since the beginning of the war, no fruits have arrived in the Gaza Strip. If they arrive, their prices are astronomical.
I hope that there will be a solution for these children in the future. Not only my children. For all the displaced children in Gaza, those in schools, in shelters, and in homes, We cannot help them.”
We are grateful for your ongoing support and partnership. Your support is vital for the health of PKU children.
Before the conflict escalated, our team had already delivered medical formula to Ard El Insan in Gaza, a crucial aid in these trying times. In a conversation with Jamal, a dedicated staff member at Ard El Insan, the stark reality of the situation became evident. He mentioned, “Reaching Dr. Hana has been a challenge due to the disrupted communication lines. From what I gather, newborn screening for PKU isn't happening, an issue we urgently need to address."
Since October 7, our efforts have enabled us to support over 100 children across Gaza, providing them with baskets filled with fresh produce and special dietary flour whenever possible. Our PKU Tiger Team, constituted to address this crisis, has been relentless. We reached out to global organizations like UNICEF and WHO for assistance with medical supplies and dietary needs specific to PKU patients. Unfortunately, the scale of healthcare needs in Gaza has stretched these organizations thin.
Securing medical formula is paramount for the growth and neurological development of affected children, motivating our team to coordinate with local suppliers and strategize a distribution plan. The onset of conflict necessitated a revamp of our project's strategy, aimed at distributing weekly baskets of specialized food, initiating a cooking show to educate and engage, and ensuring regular medical testing. Our commitment to these objectives remains unwavered.
Your continued support and collaboration are critical in this endeavor, making a significant difference in the lives of children with PKU.
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By Maria Syed and Donna Baranski-Walker | Analyst and Executive Director
By Nejmah Haddad | Country Representative
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