Jakarta –
That afternoon, half lying down, Muhammad Fahri al-Siddiq (17) quietly recited a series of holy verses. He could only lie down and was unable to sit perfectly due to the imperfect osteogenesis. She has had this bone disorder since she was five years old, which causes her bones to break easily or become brittle. It is known that this type of disease is rare and is detected 1 in every 20 thousand to 50 thousand births.
Sani, 39, Fahri’s mother, said her son’s bones were broken. Moreover, the bones of this teenager from Sipadong, Siberu and Bandung can be broken by just coughing or being hit with a pillow. Sani is also increasingly worried because Fahri’s bone fractures have recently become more severe than before, so they could break for no reason.
“Then the fractures were in the two thighs, now the left and right thighs, there is no reason. As for the two thighs, one of them was in the Islamic boarding school directly when he was sleeping suddenly penniless, and the other is currently being treated at home. Yes actually kayak Jennysuddenly again conversationthe bones are bent and broken Just like thatSane told the team berbuatbaik.id in his home.
The mother said that Fahri could not recover from this rare disease because Fahri’s bones were not able to absorb calcium due to poor collagen formation.
“So the doctor said it was passed on to me, vitamins from eating food or vitamins that are also taken cannot be absorbed by the body. Even if they are exposed to sunlight they cannot be absorbed, so for the drugs that are now chemotherapy and so on. On, just for prevention From a long period of time if we take medicine, it will be like that again,” Sani said.
From the age of 5, he said, Fahri had been on medication and was being injected once a month with vitamin D and taking vitamin D until his doctor finally advised him on chemotherapy. In fact, Sani’s condition is almost the same as that of Fahri, who also suffers from a bone disorder, but not as bad as that of his eldest son. In the past, his left hand and leg were broken, which caused him to have difficulty walking and lifting heavy loads.
 Muhammad Fahri Al-Siddiq (17 years old) suffers from a bone disorder. Despite this, he dreams of becoming a hafiz or memorizer of the Qur’an. Donate to Fahri! (photo: doinggood.id) |
Not only does Sani struggle to take care of the eldest Fahri, but he also has to earn a living for his two children. He was working as a salesman. However, since the COVID-19 hit, he had to stop trading. Therefore, he decided to earn his living as a washerwoman in a neighbour’s house with an income of IDR 50,000 per job.
“Indeed, Fahri was entrusted by God and his mother. In this case, the mother learned a lot of lessons. Then the mother wants to convince Fahri. Fahri is like the others. Fahri is capable. If he wants to try, he can do it.. So, I want people to say that there is no There is a cure, there is no disease, let’s look for it. Up to this point, there is a medicine that can enter, and this is the happiness of the mother herself. That person, as long as we can try as long as we can continue to search. There is no other way,” Sani explained.
According to him, during his growth, whenever Fahri suffered a bone fracture, it would normally be re-attached naturally slowly, but the shape of the bones became imperfect, such as the fibula, thigh, ribs, elbow, knee, even Fahri’s shoulder, which looked twisted and unusual. In addition, the sternum and back protrude, making it difficult for Fahri to breathe, as well as to perform other activities. This condition also made him unable to lie down. Even if he sits down, his hands must support him, and he cannot stay still for a long time.
“It’s very cruel If the situation is uncomfortable quickly annoyed. if level Backbone, if for another MAh no. If it is on the thigh MAh So it can’t be bent, can’t squat. If it’s here, it’s back to the neck very painfulthen it also can not be lookFari said.
Despite being presented with such a trial, Fahri did not want to give up on the situation. He dreams of becoming a memorizer or memorizer of the Qur’an. Because of his desire, he always took time to memorize the Qur’an.
“I want to try to make it more informative, calmer, and more emotional That’s it. So it would be useful to a lot of people.”
Fahri had previously received an Islamic religious education in Darut Tawheed Bandung, but his bone fracture got so bad that he had to leave the Basantrine. However, Fahri is optimistic and hopes that God will give a miracle to get him running again.
He hoped “just be as healthy as before so I can go anywhere, so it’s easy and I can go to heaven”.
Although osteogenesis imperfecta cannot be cured, Fahri is not discouraged. So high were his hopes, that he would be able to walk and be active again that he might reach his goal of becoming a hafiz. However, all this requires patience and the support of family and friends for inexpensive medical treatment so that Fahri can lead a better and more independent life.
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