We first met Hafis in 2016 when he was 12 years old, he came to the Complex Mission with a small growth on the roof of his mouth. Hafis was presenting early signs of a complex genetic disease called Cherubism, the growth of abnormal bone tissue on the lower part of the face. This rare genetic disease results in the enlargement of both the upper and lower parts of the jaw. The bone soon begins to be replaced with cyst-like growths, resulting in swollen and round cheeks.

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Project Harar’s medical volunteer team and partner medics from Yekatit 12 Government Hopital decided that it was best to see if the natural progression of the condition would diminish and monitor and review the case until surgery was necessary.

Hafis was very shy and would avoid smiling so the growth in his mouth was less visible, he also reported bullying in his community.

Hafis returned to us in 2018, the tumour had rapidly grown in size, it was causing him a lot of pain and he was struggling to breathe, eat or speak. The Complex Mission medical team knew the condition would become life-threatening if Hafis did not receive surgery.

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The operation was difficult but the tumour was removed and the final result was extraordinary – Hafis no longer covered his face and was able to open and close his mouth so he could eat properly, breathe and speak.

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Although Hafis lives in a remote area of the Oromia region, Project Harar Programme officers have been able to keep in contact with his family and monitor his progress. We caught up with Hafis on our 2020 Complex Mission, it was truly amazing to see the new level of confidence he had gained since his surgery in 2018. Because of the complexity of the disease, Hafis’s condition will continue to be monitored by our specialist volunteer medical team in collaboration with Yekatit 12 Government Hospital in Ethiopia.  

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