Food as Medicine for Palestine's PKU Kids

Your Donations Continue To Provide Vital PKU Formula!

We cannot emphasize enough how significant it is to ship a supply of formula for the 4th time to PKU families in Gaza and the West Bank.

This was our fourth and largest shipment yet! We raised nearly $54,000 in the GlobalGiving Bonus competition then added-in another $8245 from donations to RA’s general fund to purchase Mead Johnson medical food from a supplier in Ramallah who provided the cans at a significant discount. In total, thanks to your donations, Rebuilding Alliance bought and delivered 310 cans of Phenyl Free Type 1 (for babies up to 3 years old) and 1410 cans of Phenyl Free Type 2. Thank you for making this shipment happen!

In this 4th shipment, we focused on Gaza because shipments to Gaza from the Palestinian Ministry of Health have been so unstable. Luckily, two other organizations also sent medical food in the months before our shipment arrived, helping to cover the gaps. Because we learned that the Palestinian Authority was only providing medical food for babies up to 2 years old, we purchased mostly Phenyl Free Type 2 for children over three years old, with a small number of cans for any emergency needs of the babies. Our partner in Gaza, Youth Vision Society (YVS) in Gaza City, received 240 cans of Type I for 17 children, and 1080 cans of Type II for 143 children.

• YVS delivered to five locations in Gaza to make it easy for Gaza families to pick up their supply. About 75 families have picked-up their supply. That is fewer than expected but since 70% of Gaza PKU families have more than one PKU child, only a small number of families did not pick up their supply yet. Some said they already received their cans from another organization. However because children require 6 cans per month, they will need these soon.
  
  We were surprised that YVS chose to deliver only half the shipment in August, with the other half delivered in September and October. We asked them to deliver all cans received, equally to all children in the program, all at once so that the parents can store and ration the food, adjusting in response to the child’s monthly blood tests.

• Our partner in the West Bank, the PKU Charitable Association in Bethlehem received 400 cans of Mead Johnson formula in July: 70 cans of Type I (for 0-3 year olds) and 330 cans of Type II (for those over 3 years old). These cans are mostly for families whose children can't tolerate the Phenex formula provided by the PA Ministry of Health. These children live across the West Bank in Ramallah and Bethlehem as well as near Hebron in the south and Jenin in the north. The PKU Charitable Association used the offices of the Palestine Medical Relief Society to deliver to families who came by to pick up their supply of formula at the office closest to them.

The Bethlehem moms in the PKU Charitable Association also arranged for pick-ups of gluten-free flour for West Bank families in June after hearing of a large donation from the Hashemite Jordanian Charitable Association. PKU moms rock! 15 kilo packages of flour were distributed to 61 families--40 from Bethlehem and the rest from Ramallah, Hebron, and East Jerusalem. The flour is reserved only for people with celiac disease, but people with PKU can also benefit as their diets have some overlap. One sack of flour will last one child about a month or so.

Dr. Raed Hindi, the founder of the PKU Charitable Association and a PKU parent himself, also spoke of not just the physical suffering of the children but the "psychological suffering" of their caretakers. He is heartened by the increased awareness of PKU because of Rebuilding Alliance’s Tiger Team of volunteers who meet every week.

Good care requires specialized insight. There’s only one metabolic disease specialist in all of Palestine, Dr. Nadirah Damseh. Dr. Nadirah is the Consultant Clinical Geneticist and Consultant Clinical Biochemical Geneticist at Al-Makassed Hospital- Jerusalem, Caritas Baby Hospital- Bethlehem and the Specialized Pediatric Medical Center Ramallah. She and Dr. Raed Hindi recently presented, “No Turning Back: How to Support the Mental Health Needs of Families with PKU” to the 8th International Conference on Mental Health and Human Rights in Gaza. (see attached powerpoint presentation).

Gaza Survey of PKU Families

Just as our first shipments arrived in December 2020, Rebuilding Alliance’s PKU Tiger Team initiated an assessment of 126 PKU families in Gaza. The questionnaire was administered to family members of 126 PKU individuals, by telephone with the assistance of volunteers from the Youth Vision Society, during the period 1/26/2021 – 2/1/2021. Fathers, mothers, one brother and one grandparent responded. It is presumed that the respondents were primary caregivers. Birthdates ranged from 1986 – 2020 for 62 female and 64 male individuals. In addition, we learned of four individuals with PKU who had passed away within the past few years.

We’ve worked hard to review and summarize the data, attracting experts in data visualization to help. We hope the survey will lead to further research and awareness to overcome the heartbreaking situation of Palestinian PKU children. The results of the Gaza survey is in the PDF form attached below.

Some notable responses from the Gaza survey, which was completed just after the first formula shipment reached them:

• One PKU family didn't receive medical food from the Gaza Ministry of Health for three years until your donations provided it for them;
  
  
• Around 70% of Gaza families with a PKU child have more than one PKU child. These families face an exponential burden of medical care, planning, and worry surrounding their children’s food supply and future;
  
  
• Over 97% of patients see the same medical specialist. This specialist is also the head of the Gaza Ministry of Health’s testing laboratory;
  
  
• Of the 66 children tested, only four children (6%) under the age of 15 are in the ‘Safe’ range. Ten young people over the age of 15 are in the safe range of 10 Phe level or less.

The PKU Charitable Association in Bethlehem would like to extend the survey to the PKU families in the West Bank. Frustrating this, the PA Ministry of Health has not yet provided contact information for families with PKU — we’re sending reminders and developing a work-around to contact families through Facebook and WhatsApp to invite them to participate.

The challenges are enormous, but thank you for being there for this important project. You uplift Palestinian PKU families, and your ongoing support makes all the difference.

Links:

• 2021 Gaza Questionnaire (Google Data Studio Presentation)

• 'No Turning Back' powerpoint by Dr Nadirah Damseh (PDF)