A baby suffering from spinal muscular atrophy has died after receiving a gene therapy treatment costing GBP 1.6 million, making it one of the most expensive treatments in the world.
Ahmed Al-Azab, two-year-old Layal Ahmed’s father, announced his daughter’s death following her treatment that cost EGP 35 million (GBP 1.63 million) on Facebook yesterday.
Layal was diagnosed with spinal muscular atrophy (SMA) six months after she was born in April 2019.
SMA is a rare disease that results in the loss of motor neurons and progressive muscle wasting, which can be treated via extremely expensive gene therapy injections.
Local news site EG24 reported that the toddler’s parents could not afford to cover the monumental cost of the gene therapy, so they turned to the Ministry of Social Solidarity for help.
A successful fundraising campaign led to the money being raised in just a few months.
Before the money could be spent on the treatment, Egyptian President Abdel Fattah el-Sisi announced that all children suffering from muscular dystrophy would be eligible for treatment at the Spinal Muscular Atrophy Treatment Centre at the Nasser Institute Hospital with the state covering the cost.
The announcement from the Egyptian government filled the family with hope after they had spent months desperately trying to get their hands on the treatment their sick baby so badly needed.
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Dr Hala Zayed, the Minister of Health, announced that Layal had been injected with the gene therapy at the Spinal Muscular Atrophy Treatment Centre on 3rd August.
Despite the treatment, the toddler’s condition continued to deteriorate, and she died less than two months after being injected.
Local news site Youm7 reports that she was buried in the Egyptian port city of Damietta today (23rd September).
The funds that the family received following its appeal to the Ministry of Social Solidarity were donated to the Long Live Egypt Fund.
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