Sam Bailey

The decision by the HSE in June to fund the drug Spinraza for treatment of spinal muscular atrophy gave hope to 26 children in Ireland who live with the condition.

Two of those young people, Glen McHugh Farrelly and Sam Bailey, live locally in Clondalkin and Rathcoole.

Their families had campaigned tirelessly for the “miracle drug” Spinraza as it is clinically effective and has been proven to work by slowing down the muscle wastage and in many cases allowing muscle strengthening.

The drug is administered by spinal injection every four months and is currently the only approved treatment available for patients of spinal muscular atrophy.

However despite the announcement from Minister for Health Simon Harris four months ago that the HSE would fund Spinraza, Glen McHugh Farrelly and Sam Bailey are still waiting to receive the drug.

The drug is administered by spinal injection every four months and is currently the only approved treatment available for patients of spinal muscular atrophy.

The result of a deficiency of protein called SMN, spinal muscular atrophy affects a child’s muscular development, the earlier the symptoms are noticed, the more severe the type.

Local Independent Cllr Francis Timmons says it is totally “unacceptable” that Glen and Sam are still waiting for their treatment.

“Despite Spinraza being announced on 11th June by Minister for Health, there has been no Spinraza for Glen in Clondalkin and Sam in Rathcoole,” Cllr Timmons told Dublin Gazette.

“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 and an added urgency in that Glen is 18 in two weeks.

“I plead with Minister Harris to act urgently to ensure both Glen and Sam and all others living with SMA get Spinraza now!

“I am putting down an emergency motion on this at the Clondalkin area meeting, I have also written to the Minister.

“I plead with the Minister for Health Simon Harris to act now and deliver on his promise without delay.”