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Health Minister Mike Nesbitt has met with Newry boy Alfie Pentony and his family to hear first hand the challenges faced by him and others with Duchenne Muscular Dystrophy.
Newry and Armagh MLA Liz Kimmins said she was very "encouraged" following a meeting this week with Health Minister Mike Nesbitt and families of children with Duchenne Muscular Dystrophy.
Ms Kimmins said: "The meeting with Minister Nesbitt was very encouraging, I felt that the Minister listened intently to the boys who were in attendance and all the parents. Five families joined with me, and they described very eloquently the constant battle they have to get the level of care their children need to manage this horrible disease.
DMD is a progressive and often life-limiting disease. Muscle wasting, immobility and severe effects on the heart and lungs are some of the symptoms associated with this awful condition”.
The MLA continued: "Every minute of every day is crucial for children with DMD, and sadly the care and treatment they need to help them to live the best quality of life they can is simply not available in the North of Ireland.
Many of the families are having to travel to the South of Ireland, England, and even cross-Atlantic, in order to access life changing care and treatment which has shown to slow down the progression of DMD for the boys and essentially help to prolong their independence”.
Concluding, Ms Kimmins said: "I have asked the Minister to urgently look at what options there are to provide a much better
service for these children, and those coming behind them. A higher standard of care is the least these families can expect, and I will continue to work with them and the Minister to achieve that for all children with DMD."
