Little Carter Barr, who suffers from the severe Duchenne's form of the disease, was among 25 families from throughout Northern Ireland who took part in what was Action Duchenne's first major lobby in Northern Ireland.
His parents, Noel Barr and Julie Dalzell, have been determined and active campaigners for the charity after they suffered a series of traumatising health service delays and mix-ups over their son's diagnosis and treatment.
"Around 25 people attended the lobby and meeting and it proved to be quite a positive day on the whole," said Noel. "However, despite some assurances regarding an improved standard of care, there is still a long way to go.
"Julie and I both made presentations and everyone was particularly moved by Julie's speech in which she spoke from the heart about the struggles and heartache we have faced since Carter was diagnosed with muscular dystrophy - a condition characterised by progressive muscle-wasting and weakness and caused by mutations in the genes responsible for the functioning of the muscles. I think everyone in the room was appalled by what we have been put through and our experience certainly highlighted the need for change."
At the meeting, director of secondary care, Mr David Galloway, who attended on behalf of the Health Minister, Michael McGimpsey, confirmed £9m had been alllocated for children with complex medical healthcare needs over the next three years.
"They have also promised to have a specialist nurse and consultant neurologist in place by September," explained Julie. "We would really like a centre of excellence established in Northern Ireland, like the one Carter attends in Newcastle in England, or failing that, a satellite clinic, but at least this is a step in the right direction.
"We don't want Northern Ireland to be left behind when it comes to treatment and care of children with Duchenne's - in Denmark, for instance, sufferers are living well into their 40s. They have jobs; they have a life. Unfortunately, in Northern Ireland we have a 'Third World' health service when it comes to treatment and care of children with muscular dystrophy.
"It is has just been one big long fight to get what Carter needs and deserves - and which has even been prescribed by the experts in England."
Noel and Julie's concerns centre on a series of blunders - ranging from a delayed diagnosis to a query over authorised treatment prescribed by experts in Newcastle. The couple, who have two other children, also feel let down by what they describe as poor communication skills from the medical profession on the ground, compounded by a general lack of understanding, back-up support and counselling.
"At the every beginning, when it was becoming obvious that something was seriously wrong with Carter's muscle tone, we were told he was just a 'lazy' baby for his age," said Julie. "Then, after blood tests were not properly read in context, we received an unnecessarily alarming call saying that Carter was at risk of multi-organ failure and could have a stroke or heart attack at any minute because of an abnormally high level of CK (creatine kinase) enzyme. That was the most terrifying part of our medical journey into the world of muscular dystrophy.
"Later still, a neurologist couldn't read Carter's notes properly and then we spent weeks chasing up appointments for Newcastle which were never made. Eventually, six months later, an appointment came through and an expert at the Newcastle centre advised that Carter should wear night spints because of a degree of tightness in his left leg."
Delight that, at last, someone with expertise was dealing with Carter's condition, soon turned to despair for Noel and Julie when a doctor back in Northern Ireland was dubious whether splints would help at all. Another "fighting session" followed which turned into months of delay before Carter was fitted with the splints he should have had within six weeks of the Newcastle visit.
Today, one year on from his diagnosis, Carter remains a bright, happy child, more concerned about tractors and fire engines than worrying about his next session of physiotherapy or when he will have to start taking powerful steroids to make his muscles stronger.
"Carter is amazing," said Julie. "If anything positive has come out of all this it is that we appreciate all the small things in life much better now; things which previously we took for granted. Every day now is precious and an opportunity to enjoy normal, family things. Carter is doing well at the minute and looking foward to his first day at school in September."
As well as caring for Carter, his younger brother Leon and big sister Jade, Noel and Julie also find time to fund-raise for research, as their ultimate aim is see their son benefit from a cure to what is currently an incurable condition.
"It's not out of the question," added Julie. "It could happen in Carter's lifetime and that is what keeps us going. We have helped raise around £17,000 so far and our next challenge is the 'Lap the Lough' bike ride around Lough Neagh. For now though, it is a necessity to have standards of care improved because at the moment it seems to be a post-code lottery which dictates how well you and your child might be treated.
"We have to make our voices heard for Carter's sake and for the sake of other children coming behind. We are determined our son will not become just another Duchenne statistic."
Anyone who would like to add their name to the sponsor list for Lap the Lough or who would like to find out more, can contact Julie and Noel on 028 97533752 or email noel@barr76.orangehome.co.uk