'I will never give up battle for drug to help Grace'
A mum who has been fighting for two years for the only drug that can help her young daughter has vowed that she will not be "giving up".
Grace Cogan (9), from Carrickmacross, Co Monaghan, suffers from a rare, painful condition called Morquio which has left her just the same size as a two or three-year-old.
It also leaves her fatigued and her mum, Gráinne Cogan, says expensive enzyme-replacement drug Vimizim could change her daughter's life.
"I am not going away or giving up, this is our daughter's life," she said.
Vimizim costs around €400,000 a year for an adult and the manufacturers, BioMarin, made an application for it to be funded by the HSE.
As part of that process, Vimizim was assessed by the National Centre for Pharmacoeconomics (NCPE), who decided last December not to recommend it for reimbursement.
Following the recommendation from the NCPE, the HSE examines all the evidence which may be relevant for the decision; the final decision on reimbursement is made by the HSE.
Ms Cogan said she was frustrated that if she lived across the Border, a short drive from their home, her daughter's life would be so different.
"We do not have any choices when it comes to treatments. This is the only drug in the world to treat Morquio. We do not have any alternative for Grace," she said.
"It has been tested and cleared for use and it is used in lots of other countries and yet my daughter is suffering because it has not been approved for funding in Ireland."
The family thought their prayers were answered last year when the HSE approved their application for Grace to receive the drug under the Treatment Abroad Scheme.
However, it was an error because the drug is not approved for use in the Republic and as such the approval cannot be put into action.
Fellow sufferer Aoife McGee (9) lives a one-hour drive from Grace in Cookstown, Co Tyrone. She began on Vimizim last June.
Her mum Seanín said: "There has been a marked difference in Aoife's stamina and overall health.
"Most significantly she used to be very prone to chest infections which resulted in hospital stays and very strong antibiotics. This hasn't happened at all since commencing the therapy."
In a statement, the HSE said: "The HSE has met the company and no formal conclusion has been arrived at to date."