Crunch meeting ahead in bid to save terminally ill Limavady boy

Meanwhile, Prime Minister David Cameron is to receive a letter today, hand-delivered to 10 Downing Street by children with the same medical condition as the local boy, calling for the medicine to be made available on the NHS in England.

Callum, a five-year-old from Limavady, suffers from a form of muscular dystrophy known as Duchenne - a condition with no cure and, until recently, not even drugs for treatment. He is now amongst a small group of Duchenne sufferers in the UK who could benefit from a ground-breaking new medicine known as Translarna.

A campaign, under the name Team Callum, has been ongoing for some time locally to secure the breakthrough new medicine for the Limavady boy before time runs out and to support ongoing research efforts.

The nature of his condition means that as time goes on, his muscles will rapidly deteriorate until he is wheelchair bound and even the new medicine will do nothing to halt the advance of the condition. Without intervention, Callum is unlikely to live beyond his early 20s.

His mother, Laura, is heading to Stormont on Monday (June 15) to meet with the Director of Commissioning at the Health and Social Care Board as she bids to secure the medicine for Callum before it is too late.

She said: “Translarna got a conditional license 23rd May 2014, available in Spain and Germany. Our application was put in for IFR (an individual funding request) in March.

“That had already went through by the time of the former Health Minister, Jim Wells’ resignation. Maeve McLaughlin, the Chair of the Stormont Health Committee, got in contact with me to say that she would take it on as a personal case.

“I know that she wrote to them asking for an update on the application and it didn’t sound too promising. They said that because it wasn’t NICE approved yet that they had not made a decision.

“It seems to be taking so long but it is time that Callum hasn’t got. There are no guarantees with Duchenne. They tell you that Callum is going to be unable to walk, that his heart is going to stop working and they can give you a general time - but there are no guarantees.

“We know that all these things are going to happen but we can’t say for sure when. We found out that it is affecting his heart already and that wasn’t supposed to happen for years to come. We just don’t have the time for them to be messing about with it.

“We’re in Stormont on June 15 and Dean Sullivan is going to be there so hopefully we will get some answers. A few of the boys are going to hand over a letter to David Cameron.

“If the NHS in England decide to make it available then it is very likely that Northern Ireland will follow them so a lot depends on David Cameron too.”