A Dublin mum has slammed the HSE for delays in providing a "miracle drug" that could halt the effects of her son's life-threatening illness.
Fiona Bailey's son Sam, nine, is one of 26 children in the country suffering from Type 2 Spinal Muscular Atrophy [SMA], a rare genetic condition that weakens muscles and affects motor nerve cells in the spinal cord.
The families had campaigned for over a year for the HSE to approve the provision of Spinraza, a drug that can halt the effects of the disease.
The HSE finally approved the supply of the drug in June, with the families initially hoping for a July roll out date.
But four months later, Sam and the other kids still have not been proved with the drug.
With flu season approaching, Fiona is extremely worried for Sam's health if Spinraza is not supplied soon.
She said: "We are devastated and disgusted at the treatment Sam is receiving from the HSE once again, no communication, no transparency and plan going forward.
"We had received provisional dates of July, August and October/November for the roll out of Spinraza and just last week there appears to be some doubt over the October/November roll out date.
"Sam was in ICU this time last year, and three times since. It is unthinkable that he will not receive Spinraza in the coming weeks.
"We are calling on Minister Harris to ensure the HSE delivers on their promise without any further delay."
Local Councillor Francis Timmons said the situation was "totally unacceptable.
He said: "I am informed that 11 children have received Spinraza since approval but i believe from families that this is not the case and that the only children getting Spinraza are the Type ones who where already getting Spinraza before approving it for the other 25 children in June this year. This is totally unacceptable."
Dublin Live has contacted the HSE for comment.
