Disaster Response Palestine Project #48418

Food as Medicine for Palestine's PKU Kids

by Rebuilding Alliance

Project Report | Sep 15, 2023
There's got to be a better way

By Maria Syed and Donna Baranski-Walker | Analyst and Executive Director

PKU Mommy's Kitchen Host Neveen and Chef Sanabel

There’s only one specialist in clinical genetics and inherited metabolic disorders in all of Palestine and her name is Dr. Nadirah D. An assistant professor of medicine at Al Quds University, Dr. Nadirah has a busy practice serving East Jerusalem, Ramallah, and Bethehem. Dr. Nadirah became an advisor to this project soon after her return from a medical fellowship at the University of Toronto where developed her specialty in inborn errors of birth.

This past July, for our regular check-in meeting with Dr. Nadira, Rebuilding Alliance's tiger team learned that Dr. Nadira was seeing a wide number of PKU children all with the same problem:

Children who were receiving adequate medical food were showing very high blood phenylalanine or phe measures with numbers over 15 mg/dl when they should have measured under 6 mg/dl
The parents, nutritionists, and even the pediatricians mistakenly thought that the medical food was a curative medicine that would allow their PKU children to eat normally — but nothing could be further from the truth
They did not understand that a strict low protein diet is absolutely necessary and that medical food is the supplement that makes it possible to live and grow on a diet with nearly no protein.
Children with any PHE over 6 are experiencing irreversible brain damage

Normal blood phenylalanine, or phe measures less than 2.0 mg/dl

Acting on Dr. Nadira’s advice, we’re restructuring the project to offer PKU children and adults the right treatment that helps keep them healthy and avoid health complications. This would involve:

Providing transportation to the medical laboratory to run blood tests and obtain information on their health
Providing a weekly basket of Prescription Food put together under the expert advice of Dr. Nadira that keeps the PHE level under permissible levels while offering the nutrition PKU children need for growth and brain development
Running a weekly cooking show that features Chef Sanabel, a PKU parent, to teach healthy and PKU-safe recipes to PKU parents

This new approach aims to enhance the overall health and well-being of PKU children and adults by:

keeping PHE levels under check through regular blood tests
teaching dietary management skills to parents
increasing knowledge about PKU disease
reducing PKU-related complications and health issues, and
improving quality of life for PKU patients and their families.

Thank you for caring for PKU children and parents. Your continued support is needed to provide healthy food and increase awareness about this disease.

Kentucky Fried Cauliflower, a PKU-safe recipe!

Professor Dr. Nadirah D., Clinical Geneticist

PKU children need a special low protein diet

Medical providers & PKU parents need more training

Links:

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Mar 6, 2023
New PKU Formula Shipment delivered in time of crisis!

By Nejmah Haddad | Country Representative

A PKU child holding medical formula

Rebuilding Alliance’s tireless work to get medical food to PKU children in Gaza finally paid off. After a gap of seven long months, Rebuilding Alliance delivered its 7th shipment of life-saving medical formula in Gaza with the help of our Palestinian NGO partner, Youth Vision Society.

This shipment, consisting of 357 cans, was distributed on December 14th among more than 151 PKU patients, mainly children. The shipment was desperately needed by the PKU children in Gaza who were on a minimal supply of life-saving medical food for the last seven months.

There were several reasons for the delay in shipment:

It was not possible to place an order for the PKU medical formula due to the worldwide shortage of medical formula. Like others, people in Palestine were affected by this shortage. Until recently, even the Ministry of Health was unable to procure the formula. Rebuilding Alliance and Palestine Children's Relief Fund (PCRF) are trying to fill the gap.
Additionally, we learned from our local supplier (and the only supplier for Mead Johnson medical formula in the West Bank), that Israeli Customs was holding up the PKU medical food shipment since June. Immediately, we pressed forward with the advocacy efforts and wrote letters to the main supplier to open up channels.
The medical food was finally released in October to the supplier, and a large amount of the supply was to be purchased by the Ministry of Health in Ramallah.
As RA waited for the supplier's answer on how much formula could be purchased, the lack of funds to cover the severity of the crisis became apparent. Instead of providing just 11 children with life-saving medical formula when there were more than 151 patients, the team decided that we would not leave any PKU patients behind. Everyone received a small bit of hope.

We went ahead and delivered the small shipment--BUT THIS WAS ONLY ENOUGH FOR 10 DAYS. The PKU emergency is not over. PKU children are still in urgent need of medical formula. Please help them know that they are not forgotten.

If you know any medical foundations, organizations, or groups who can help, please reach out to us.

RA is continuing to raise awareness about PKU on many platforms.

RA has been in touch with new potential partners such as WHO, and the Health Cluster, bringing forward the crisis. Rebuilding Alliance is now a Health Cluster Member which allows us to bring forward issues relating to health, especially PKU.
PKU has made it on the HRP for 2023. This means local and international organizations have submitted their project proposals to take on PKU issues in Gaza.
Dr. Raed Al Hindi, Founder of the PKU Charitable Association in Bethlehem attended a worldwide PKU conference in Spain, the 36th E.S.PKU Conference 2022. He presented the issue of PKU in Palestine to PKU families and was able to network with many people in the PKU community.
RA is filming more episodes of the ‘PKU Mommy’s Kitchen–Palestine' cooking show to help parents cook special recipes for their PKU children.

Together, we can ensure a steady supply of life-saving medical formula for PKU children. Please ask your circle of friends and family to join you in taking on the monthly sponsorship of a PKU child for $250 a month.

Thank you for caring for PKU children!

Medical Formula was delivered after 7 months

Medical Formula can keep PKU children healthy

Medical formula prevents complications

Parents receiving medical formula

Parents are relieved to receive medical formula

PKU children 5 cans of medical formula per month

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Sep 6, 2022
New PKU Formula Shipment will be delivered on Thursday!

By Amjad Abaza | PKU Project Lead

We’re excited to share the fantastic news with you. Our sixth shipment containing two-month supplies will be delivered on Thursday to 11 sponsored children in Gaza and many more! Since the last report, we’ve been working on many things. We’re delighted to break grounds on some new ventures, while others are still underway.

The delay in shipment to Gaza was caused by factors beyond our control. We have been facing difficulty in placing an order for the PKU medical formula due to the worldwide shortage of medical formula. Like others, people in Palestine have been affected by this shortage. Rebuilding Alliance and Palestinian Children Relief Foundation (PCRF) are trying to fill the gap. Lately, even the Ministry has been unable to procure the formula.
The formula provided under our last shipment expired on May 1st. Because of acute shortage, few parents started using expired formula. In the West Bank, Type 1 formula supplies finished in July.
As a result, people in Gaza and the West Bank have been holding protests and demanding the resumption of this life-saving medical formula. Despite the assurances, the government has been unable to resume supplies.
We’re hopeful that after the resumption of production by supplier company–Phenex, the supply line will improve significantly addressing this worldwide demand.

I’m delighted to tell you that we have aired three episodes of our cooking show called ‘PKU Mommy’s Kitchen–Palestine.’

Under the guidance of Chef Sanabel, a PKU mum, and Dr. Nadira Daamseh, the only metabolic specialist in all of Palestine, the show educates parents on the special dietary needs of children through easy and tempting recipes such as Kentucky Fried Cauliflower and Orange Cake.
We are in the process of filming more episodes for this season. With your generous donations, we hope to continue our show for many more seasons.

We have been raising the PKU disease and related challenges on many platforms.

We were able to secure a meeting with the Palestinian Minister of Health, Dr. Mai Alkela, along with the congressional staff in June. During our discussion, we highlighted various challenges faced by PKU families in providing care to their children such as the shortage of medical formula. The Minister promised to look into these issues and work on addressing the shortage of medical formula in Gaza.
We mentioned in our last report that we have been trying to become part of the UN health cluster. However, we haven't made headway yet.
In August we also entered the MIT horizon prize aimed at finding a technological solution to a rare disease. But this didn't materialize.

We remain committed to supporting PKU children, and we know that you’re too. We appreciate the support you have extended to PKU kids.

Please ask your circle of friends and family to join you in taking on the monthly sponsorship of a PKU child, which comes to a total of $250. If you are already sponsoring a child with a monthly donation, thank you for caring for PKU kids!

A PKU child holding can of medical formula

PKU team making a delivery

Links:

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