A MAGHERAFELT teenager living with a serious muscular condition will finally have a back brace fitted tomorrow (Friday) after years of waiting.
Fourteen-year-old Marc Bigger, who was diagnosed with Duchenne muscular dystrophy when he was aged 10, had been told by the Belfast Trust that they did not have the necessary funding to fit him with a specially moulded back brace.
But when his mother Marina Lupari spoke to the press a Director at the Trust confessed his embarassment at how she and her son had been treated. A public outcry followed Marc’s story and last week he was finally fitted for the long-awaited brace which will improve his posture and relieve the ever-increasing pressure on his heart and lungs.
While it appeared that funding had been the crucial issue, Ms Lupari said the real problem was the system currently in place for dealing with the condition in Northern Ireland.
“This is not about money, it is about health systems,” Ms Lupari, an assistant director of nursing with the Northern Health and Social Care Trust, told the Mail. “What we had in Northern Ireland was a system which allowed surgery or nothing. There was no choice for boys like Marc. They now have a choice between surgery and a brace. Marc’s legacy is that no other boy will have to go through this again.”
Ms Lupari, who said her son was looking forward to having his brace fitted, said she was overwhelmed at the level of support they had been given since the issue was first raised earlier this month, including from the Belfast Trust.
“I’m totally and utterly overwhelmed by the response we have received from people,” said Ms Lupari. “Before this Marc genuinely believed no-one cared about what happened to him but now he knows that they do care.”
Marc will have the back brace fitted on Friday and it is hoped he will be able to wear it for a few hours each day to reduce the rate of deterioration caused by the condition which has bent his spine by 80 degrees so far.
Ms Lupari said her son is hopeful at the prospect of travelling to see his beloved Arsenal in the Emirates Cup in July this year. “He has been over to see the team before and they have been very accommodating but now he is unable to fly so we will have to sit down and look at different travel options,” said Ms Lupari.
The Magherafelt woman said family, friends and neighbours have always supported her and Marc. “We have been so lucky to have such a great support network all along and now we have heard from people across Northern Ireland and as far away as America,” she said.
Marc’s school St Pius X College presented a cheque to the family on Wednesday and the money will be given to Horizon House in Belfast, which is part of the Northern Ireland Children’s Hospice.