The Muscular Dystrophy Association in Libya announced the death of the child Dareen Al-Mahdi Salem Al-Sayed, one of the atrophy patients targeted by genetic injection.
The association added that the cause of death was the delay in the gene injection and the discontinuation of the drug Risdiplam, as she had only been on the waiting list for one year, two months and nine days.
The association explained that Dareen was admitted to intensive care for 50 days due to the deterioration of her health condition, noting that she lost 4 of her siblings, according to the association.
The association also announced the death of Rawad Abdullah Al-Hamisi, a patient with atrophy from the city of Zuwara, last Friday, and the death of the child Raghad Adnan Al-Hanbouk (7 months) after suffering from a health problem and entering the intensive care unit last Wednesday. She is from the city of Al-Khums.
The association pointed out that the segment of muscular dystrophy patients is still between promises of hope and pain, in light of the delay in health care and the provision of spinal and Duchenne medications, sending children abroad, and providing medications that limit the complications of atrophy.
On August 20, the association announced the death of the child Ayoub Naji Ahmed, a 16-year-old patient with dystrophy from the city of Yafran, after he entered the clinic suffering from shortness of breath, noting that he had two brothers who were suffering from the same disease and were waiting for Duchenne medication to be provided.
On August 15, the association announced that 3 cases had been admitted to intensive care due to procrastination and delay in taking the genetic injection and the discontinuation of the Risdiplam medication after they were in good condition, according to the association.
On August 13, the association announced the death of the child “Zahra Bilal” (one year and six months old) from the city of Tajoura, due to the delay in the gene injection and the interruption of the medication. She had been waiting on the list of cases nominated to receive the gene for 10 months.
On August 9, the association mourned Ahmed Shalbak, nicknamed “Zaatar,” after he suffered from a health problem.
Last July, the association announced the death of three muscular dystrophy patients within one week, namely “Bayan, Mansour, and Naji,” expressing its dissatisfaction with the lack of provision of medications, genetic tests, and the opening of a health care unit for atrophy patients.
The association pointed out the great dissatisfaction of the muscular dystrophy patients and their families due to the delay in their most important demands and rights, which is sending children abroad to receive the genetic injection.
The association also expressed dissatisfaction with the unavailability of spinal and Duchenne medications and the failure to start genetic analyses despite the promises made by Prime Minister Abdel Hamid Dabaiba months ago, according to the association.
Source: Muscular Dystrophy Patients Association in Libya
2024-09-17 09:41:03