The head of Libya’s Muscular Dystrophy Patients Association, Mohamed Abu Ghmeyqa, has raised alarm over the deteriorating health condition of dozens of Libyan children suffering from spinal muscular atrophy (SMA), urging urgent intervention to save their lives.
In a statement to LAM News Network, Abu Ghmeyqa revealed that around 30 children under the age of two are in desperate need of lifesaving gene therapy, warning that every day of delay reduces the treatment’s effectiveness and diminishes the children’s chances of recovery.
The last group of six children was transferred for treatment during Ramadan to the United Arab Emirates, but no further cases have been evacuated since, intensifying the fears of affected families.
Abu Ghmeyqa added that several children are on the verge of requiring mechanical ventilation, which would disqualify them from receiving gene therapy entirely. He stressed the urgent need for continuous access to genetic testing, a crucial tool for accurate diagnosis and early intervention—especially for families with multiple affected children. In one documented case, seven siblings were diagnosed with the disease.
He also criticized the Libyan authorities for supplying patients with substandard medical equipment, including manual hospital beds that were supposed to be electric, and non-functioning wheelchairs, further compounding the suffering of patients and their caregivers.
Abu Ghmeyqa called on relevant authorities to immediately resume the medical evacuation of children in need and provide the appropriate devices and support, emphasizing that delays threaten the lives of dozens of young Libyans.
