Parents of boy with muscular dystrophy to hold rally at Dáil to campaign for vital drug
Archie Ennis: GoFundMe campaign has so far raised €600,000 for Archie’s treatment abroad, but it not even half of what he needs.
The mother of a child with a muscle-wasting disease is to hold a rally at the Dáil on Wednesday, urging the Government to support the introduction of a vital drug here that will help slow progression of the disease.
Archie Ennis, aged 8, from Dublin, was diagnosed with muscular dystrophy before Christmas — a condition that affects about 120 boys in Ireland. There is no cure for it.
The schoolboy’s parents, Una and Kenneth, launched a GoFundMe campaign to help pay for specialist gene therapy in the US, which costs at least €3.2m.
Meanwhile, the couple had also been campaigning for the Government to sanction pay for a new drug called givinostat, which has just been approved by the European Medicines Agency.
Ms Ennis told the : “This drug will slow down Archie’s muscle-wasting disease, but it also means it will help other children here.
“The drug was approved by the EMA recently, now the pharmaceutical companies can apply to the Government to see if they will refund the drug.
“But that will take time, as they have to wait for the Government to decide if they will pay for this in order to make it free here.
“It makes sense for it to be made available free here, if the Government doesn’t pay for the drug, they will be paying for other things such as more equipment for a child with the disease, they’ll be paying for the care of that child, and carer’s allowances — it all balances out,” Ms Ennis said.
The rally outside the Dáil will take place at 1pm and Ms Ennis will be joined by family, friends and the other parents of boys with muscular dystrophy, who are all supporting the call for the rollout of givinostat here.
“Time is muscle” she said. “Archie’s muscles are weak; he needs help going up the stairs and he gets tired when we are out on walks.
She said the drug givinostat was something “that the country needs,” but Archie will also need gene therapy — for which they are fundraising.
The GoFundMe has so far raised €600,000 for Archie’s treatment abroad, but it is not even half of what he needs.
“We have been to Miami to get tests done but we really need the drug introduced here to start the process.
“We are hoping to follow Scotland, which is pushing to have the drug in pharmacies within five months.
“We have booked the AV room in Leinster House for 2.30pm on Wednesday and have invited all of the TDs, including the health minister to come along and hear our stories.”
