Tag Archives: Spinal Muscular Atrophy

A Sixmilebridge boy, who has a very rare life-limiting illness has travelled in the world’s first interactive children’s ambulance, to make long journeys to hospital more comfortable. Jordan Perez, who suffers from Spinal Muscular Atrophy (SMA) Type Two, was the first Clare child to use the BUMBLEance recently. SMA Type Two is part of a group of disorders that affect the control of muscle movements. Confined to a wheelchair, Jordan requires full-time care on a 24-hour basis. He was honoured as one of Ireland’s nine bravest children at a Share a Dream’s National Children of Courage Awards at their Dream Ball in Clontarf Castle, Dublin last year. BUMBLEance transports sick children from all over Ireland to their treatment centres and attempt to make like a little easier for the child and their parents. Jordan frequently makes the long and usually uncomfortable journey to Dublin for treatment. Jordan’s mum, Sinead, described the journey as “very comfortable and much less stressful, as …

A SIXMILEBRIDGE mother has launched a fundraising campaign to purchase additional nursing hours for her son, who has a life-limiting, very rare illness. A new group, Nurses for Jordan, has organised a fundraising event in the Mill Bar, Sixmilebridge on Friday, December 13 in aid of local boy Jordan Perez (5), who suffers from Spinal Muscular Atrophy (SMA) Type Two. This will be just the start of a series of fundraising functions, which are required to purchase more nursing hours to meet his complex medical needs. SMA Type Two is part of a group of disorders that affect the control of muscle movements. It is caused by a loss of specialised nerve cells in the spinal cord and brainstem. Confined to a wheelchair, Jordan requires full-time care on a 24-hour basis. He was recently honoured as one of Ireland’s nine bravest children at Share a Dream’s National Children of Courage Awards at their Dream Ball in Clontarf Castle, Dublin. The …