By Jovita Sofia Jiz de Ortega | Outreach Coordinator
On November 22nd, Rebuilding Alliance's partners distributed a 2 week supply of medical food to families of PKU children (3 years old and up) in Gaza and babies (newborn to 3 years old) in the West Bank. Regarding the Gaza shipment, it only took a week and a half from the time we placed the order to arrival on the other side of the blockade—a record for Rebuilding Alliance! Our NGO partners invited families to pick up at locations nearest to them. Some asked for home deliveries.
Our involvement with PKU children began when an aunt of 2 PKU children in Gaza asked for our help to provide them medical food. Then, a doctor in San Francisco got in touch. Dr. Kimberly has 2 relatives with PKU, and she knew there must be more PKU children in Palestine. She wondered, "Who is going to speak up for these kids?" We learned there are 574 children, and Rebuilding Alliance is reaching out to all of them.
A volunteer team of about 8 or so quickly took shape across 4 continents. One of the members of our group is a PKU adult and PhD student who galvanized worldwide support for PKU children in Poland during their time of crisis 30 years ago. Another volunteer is Dr. Raed, founder of the PKU Charitable Association in the West Bank and a PKU parent. Other key members are Dr. Kimberly, Dr. Justin (Dr. Kimberly's brother and also a PKU adult), Sarah (a PKU adult), Paula (a retired occupational therapist who specialized in childhood eating disorders), Dr. Raza (a biotech researcher), and Erin (Rebuilding Alliance's new board member with experience in the biotech industry).
We began to feel optimistic in addressing this problem, but then we learned the scope was much worse than we thought. When we called the families in Gaza to ask them to pick up their supply, we learned that the Ministries of Health stopped providing vital medical food to these children 2 years ago. Some children died. Some families also didn't want to pick up at all because they were cynical about whether the supply will be available in the long-term.
We also learned that the Gaza government stopped testing newborns for metabolic diseases in July 2020. Because we couldn't talk directly to the Gaza government, it was extremely difficult to find out what is needed to resume newborn testing. We learned there are 6,000 births per month in Gaza. Of those 6,000, 2 or 3 will have PKU, and eating regular food (including mother's milk) will cause permanent brain damage.
Suddenly, Dr. Nadirah from Al Makassed Hospital in East Jerusalem found us. 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. The doctor recently returned from two fellowships in Toronto, Canada. She knows exactly what test kits are needed and which companies manufacture them.
The costs are huge—close to $200,000 a year for newborn testing in Gaza and about $143,000 a month for specialized medical food for all 574 PKU children in Palestine. Together, we must find sustainable ways to resolve both emergencies and make this a test case to restore U.S. medical aid to Palestine.
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