Seven year old Ciarán was promised the treatment in the new year.
A seven year old boy from the midlands is among those being excluded from accessing a life-changing Cystic Fibrosis drug.
35 children in Ireland aged between six and 11 are unable to access Kaftrio due to a price dispute between US pharmaceutical company, Vertex and the HSE.
CF Ireland is urging the two bodies to return to the negotiation table in order to widen access to those who need the drug.
Stephanie Kilmurray says her son Ciarán is constantly at risk of infection without Kaftrio, and forced to live a very restricted life.
The Mullingar mum says they were promised the drug back January, so the new has been very hard to take:
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