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Expensive treatment means life for Palestinian children

By Basem Awad
When Dr. Yousef Hasan and I arrived in the West Bank village of Ya'bad, we were greeted by the relieved faces of Mohammed and Tohsi. We were delivering vials of Cerezyme, the only effective medication for treating Gaucher's (pronounced "go-shays"), a rare disease affecting their two young children. ANERA's In-kind Medical Relief program distributes Cerezyme to clinics and hospitals in the West Bank and Gaza Strip, treating twelve children with the disease. Cerezyme is donated to ANERA through the Genzyme Foundation.

Mohammed and Tohsi's children, Tamer, age 5, and Lana, age 3, must take intravenous infusions of Cerezyme every two weeks. But their physician, Dr. Yusef Hamaashi had run out of his supply. Mohammed and Tohsi worried that our delivery was going to have trouble making it through the many checkpoints and bad roads of the West Bank. We were all glad that, on this trip, we experienced few setbacks and made it to Ya'bad on time.

"Gaucher's is a metabolic disease characterized by a deficiency in producing an enzyme needed to break down a compound called glucocerebroside, which accumulates and calcifies in the heart valves," explained Dr. Hasan, a pharmacist and the director of ANERA's In-kind program.

"We discovered that Tamer had the disease when he was one and a half years old," said Mohammed. "We are fortunate that he received the correct diagnosis. Otherwise, he may have died. We later discovered that our next child, Lana, also has the same condition. "

Cerezyme is one of the most expensive medications, with the normal annual cost of treatment for adults surpassing $100,000. Treatment must continue for the life of the patient. The cost of the annual treatment for 12 children in the West Bank and Gaza Strip receiving the treatment exceeds one million dollars.

"Before the second intifadah, I used to do construction work in Israel. But since it broke out, I have not been able to find consistent work. This has been the case for most residents of the village. Even when I had work, though, it would have been impossible for me to cover the costs of this medication," said Mohammed.

Thanks to the donation of Cerezyme from the Genzyme Foundation, Tamer and Lana are alive, well, and smiling.

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American Near East Refugee Aid
To learn more about ANERA, please visit http://www.anera.org/.