"They are not wearing, confused, and being bullied." ... A father appeals to the Minister of Health to treat his two children from a rare disease (pictures)

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“Someone myself helps me treat my children, so that they can lead a normal life instead of what people are afraid of.” A cry launched by a father of two children in Dakahlia to demand treatment for two of his children who had a rare disease and failed to cure them for 10 years.

Muhammad Abdel Azim Badawi, the father of the two children Ahmed 14 years old and Youssef 12 years old, said to “Al-Masry Al-Youm”: “I have 3 children, two of them, Ahmed and Youssef, were infected at the age of three with a rare disease that caused enlargement of the facial bones, the fall of their teeth and their vision impairment, and with time their shape became strange. And their schoolmates bully them, and people are afraid of them. ”

He told his story with his children, saying, “I married 15 years ago, and our Lord gave me first with my son Ahmed, and two years later, our Lord gave me Youssef, but I was surprised at the age of three for Ahmad that the shape of his mouth is strange and changes appear on his face, and blue veins appear in his neck and face from below, so my wife and I went to the Aja Hospital and the doctor He said that he has gum problems and needs to make a gum incision because the teeth looked to his lips, and we actually made the incision, but unfortunately the condition deteriorated and became suffocated during sleep and difficulty breathing, so we went to the children’s hospital in Mansoura and the doctors said that he had a tumor in the airway that impedes eating and breathing, and the doctors said that a quick intervention is necessary ».

The father added, “Indeed, we were detained at the University Hospital in Mansoura for a period of 40 days for surgery, and my son was admitted to operations for 7 hours, and we were surprised after that that the lower part of his chin was removed, and the doctors confirmed that this was in his favor and no one told us that before the operation and unfortunately the situation worsened as he grew. His face increased from the top and his face from below remained strange shape until he became 14 years old and some doctors said the surgery was a mistake, but the same symptoms appeared on his brother at the age of three also and we did not perform any operations for him, but his face also enlarged but from all directions and his shape also became strange but he can Close his mouth while his older brother could not, because of the operation ».

And the father continued: “I took my wife and went to many doctors to make sure that we were not the cause of his infection. Indeed, we did all the analyzes. The doctors confirmed that we are fine and that the disease that afflicted them is rare and affects male children and is rare in females. We told them that I have a brother with a large chin, so they told us that it could be in a weak genetic factor.” But it is not the basis, the disease is rare and has no treatment, and we follow up with them with radiation to remedy any danger to them in breathing, for example if hypertrophy increased, affecting the airway, for example.

And the father went on to say, “Our Lord gave us a third child named Saif, but praise be to God he is normal and we taught him the necessary tests and the doctors confirmed that he is healthy and does not have the same disease, praise be to God, but his sisters, unfortunately, did not receive a treatment, and what most pains me is that Ahmed and Youssef return from school crying because of the children’s unwillingness. When playing with them because of their appearance, or if some of them say hurtful words, or if they went anywhere with them and we saw fear in people’s faces. ”

He added, “The last time they were on the way to the hospital, we were in a taxi, and I found the drivers telling them to take off this mistletoe because people are afraid of them. They answered innocently, we don’t wear anything.”

He continued: “I and their mother are not able to live because we are not able to know what they have or what they need in order to be treated as children and themselves go out and play like their peers and are not able.”

He appealed to the Ministry of Health to help him treat his two children, saying, “My soul is, but a doctor tells me about treatment for them and helps me in any way, because the situation is getting worse every year and I am afraid for them, and myself in the Ministry of Health someone helps me.”

Ahmed and Youssef