Aliyah, 32 years old, the eldest of four sibblings, was born healthy and had normal development for three years. She was 3 years old when she suffered from high fever and lesion on her lips. Her parents were not aware that she was suffering from gangrenous stomatitis (also known as noma or cancrum oris), a rapidly progressive, polymicrobial infection, which lead to damaged facial tissue. Not knowing the risk, and only seeing it as mere fever and ulcer, the parents did not took her for medical advice, until the worst finally came; Aliyah lost her upper & lower lip region & some parts of her upper gum. She was also having difficulty to open her mouth, which then caused restriction of her mouth opening.
Due to the lack of understanding and with all the financial limitation, all the family could do was surrender and accept the fact that Aliyah will live with restriction. Unfortunately it was not only physical restriction she has suffered, but worst, she needed to live in shame. “I still remember how the other kids made fun of me”, she said. She survived primary education but then decided to stop schooling and locked herself at home. As she turned 10, her parents brought her to a national public hospital in Jakarta to only have her dreams broken again and again. She was told that there was nothing can be done with her condition, and the parents were even adviced to spoil her instead as replacement for not being able to cure her.
Forgotten her long lost dream for therapy, a neighbour came to her one day and told her about doctors who had been doing cleft operation for charity, and that they may be helpful to Aliyah. At the same time unfortunately, her father got a stroke attack. Aliyah was in a cross road between pursuing her dream for medication and accompanying her father, who has been her spirit to live all along. She opted for the second choice.
Until one day, Aliyah got a call from the very same doctor, saying that she wanted to meet her to see what she could do to help. Feeling that maybe it was the last chance she is left with, she went off to see the doctor with her brother through a two hour drive. Aliyah remembered “My hands were cold and I was trembling..afraid to get the same rejection as I got before”. But then all she heard was the warm greeting. “Of course we can work out something”, the doctor smiled at her “It would probably not exactly perfect, and it will need several operation stages, but I’ll do my best”. Aliyah feeling fainted knowing that someone was willing to try, knowing that her money was no longer the issue as all her medication was going to be funded by a foundation.
Two weeks later, Aliyah undergone her first operation. The two hours operation managed to join her lower lips to prevent drooling and create replacement of upper lip region using local flap from the cheek. “I’m happy now, eventhough I know I’m still far from normal”, she said “but it was the support that I needed the most, the support I got from the people that actually cares give me the strength to actually make me want to live my life with optimist, it is as if I have received a second chance to live, I will no longer feel sorrow nor shame”.
– name and pictures are published with prior consent from the respective patient