Little Luke O’Hanlon is one of an estimated 60 DMD sufferers in Northern Ireland whose parents will be among those campaigning for the level of care here to be brought up to an equivalent standard to that in England.
“Northern Ireland has the worst care standards for Duchenne sufferers in the UK”, Claire told the TIMES.
“By going to Stormont on 23 June we and other Duchenne families will be trying to raise awareness of the condition among MLAs as well as urging Mr Poots to implement more of the recommendations from the McCollum Report into care standards which identified gaps in comparison with standards in Newcastle and London.
“We now have a community of parents and patients who are well educated in the condition and who are not prepared to sit back and appease bureaucrats while our children are dying.”
The families are also campaigning to have the drug Eteplirsen – a potential treatment for the symptoms of DMD – approved by the European Medicines Agency (EMA) for UK patients.
Claire’s charity Leap for Luke, meanwhile, will host its first fundraising event since Luke’s little brother Coen was born. A motorbike run will take place on June 1. Details via their Facebook page.