'My little boy’s life is in the hands of the HSE': Mother makes plea for drug to be approved
A Dublin mother is pleading with the Health Service Executive (HSE) to approve the drug Givinostat for her nine-year-old son, who suffers from Duchenne muscular dystrophy. The family previously fundraised millions for gene therapy in the US and fears that without this daily medication, the child's condition will deteriorate.
Why it matters
It highlights the ongoing struggle for families to access life-saving orphan drugs and the bureaucratic challenges within national healthcare systems.
Una Ennis fears her son Archie will end up in a wheelchair without access to Givinostat.
The article focuses on a human interest story and the family's perspective, maintaining a neutral reporting style.
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