A Coalisland mum is delighted at her invitation to St James’s Palace to mark Prince Philip’s 50th year as patron of Muscular Dystrophy UK.
Claire O’Hanlon, whose young son Luke suffers from Duchenne Muscular Dystrophy, set up charity Leap for Luke to help raise awareness of the condition and push for further research and development.
And she said she will use the opportunity to talk to the Duke about the disparity in care between boys with Duchenne in Northern Ireland, compared to England.
Luke, who’s just four, is already feeling the effects his condition and sometimes finds himself unable to do activities his younger brother can.
After his diagnosis in 2012, his parents decided “we could either let the heartbreak consume us - or we could use that energy to ensure firstly that Luke will always be happy and secondly that we will fight tooth and nail to make sure that Luke’s fate wouldn’t be the same as his uncle and great uncles before him”.
And true to these words, Claire has been applying pressure in halls of power across the world in the push for new drugs and better care for those with the condition.
She’s just back from the states, where she joined other parents and scientists to push the FDA to approve a new drug that has been proven to stave off the full effects of MD for longer.
Although the drugs was not approved - by a small margin - she said there is hope the decision could soon be overturned.
As for her upcoming reception with the Duke of Edinburgh, she said: “The Duke will go round and have a chat so it will be an opportunity for us to tell him what the craic is here in Northern Ireland and to really get across the point that life expectancy for boys in Northern Ireland is much lower for boys with Duchenne than in London or in Newcastle.
“The care here isn’t as good as in London or Newcastle, they have neuromuscular centres of excellence,” she added.
“Over here we have a neurologist who has an interest in neuromuscular disorders. She’s very good at her job, but we have no experts over here.
“They have a muscle clinic in Great Ormond Street or Newcastle. Whenever you go to muscle clinic, you see neurologists, orthotics doctor, cardiologists and the physio all in one go, so the care is more integrated.
“We go to muscle clinic and we see the neurologist, but we don’t see anybody else. It just wouldn’t be as good.”
“I’m taking it as an opportunity to tell someone else and he might be able to do something.”
Now vice chair of the Northern Ireland Council of MDUK, Claire said that as far as she knows she is the only person going from Northern Ireland, and agrees the pressure is on to give the views here a voice.
But she has big plans.
“I’m the vice chair now of the Northern Ireland council of MDUK,” she added. “(We) direct what the priorities are for the charity.
“There’s quite a few new members on it since we took over in April, so we’re hoping to have a more proactive approach... looking at improving that care and making it mirror more what is happening in London and Newcastle.
“It’s 30 years old this year and I’m looking them to celebrate that somehow and maybe look at setting up a neuromuscular network here.”