'We need help from other people'

“Please just help, if we could do it ourselves we would take out a loan but this is massive money...

Originally from Czech Republic but living in Cavan for the past 17 years, Pavlina Minarikova is appeal for help for her four-year-old grand nephew William Moore (4).

William has been diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder that causes progressive muscle weakness and deterioration. The family has been told that William will likely need a wheelchair by the age of eight years. His only chance to get treatment is in America, called Gene Therapy Elevidys, however it will cost around €3.5 million.

“We need help from other people,” pleaded Pavlina.

“We saw videos from the children who were already there, it [the treatment] stopped it or slowed it down.

“They even started walking better,” she said.

“At the moment you have to be with him 24 hours, you have to hold his hand all the time because he’s walking on his toes.

“He has no balance,” she described.

William is currently receiving physiotherapy, however the condition is progressive.

“He is four years old now and the condition is getting worse and worse. He has the worst version, some children are not affected in their lungs and heart but his lungs and heart are affected as well.”

She predicted that by the age of 18, he will need lung and heart support, after which point they will be left waiting until “everything is weak".

“He is a very happy child, he enjoys his life, really every minute,” said Pavlina.

“Everybody would love him if they could see him,” she expressed.

Working in Encirc glass factory since she came here, Pavlina’s sister lived in Swanlinbar also before moving to Kilkenny, where William now lives with his mother Veronika Palouckova and father Philip Moore.

“Please just help, if we could do it ourselves we would take out a loan but this is massive money.

“It’s not possible to do it, please, just a little bit of help,” she implored.

“Even if they give €5 and it will be so many people, we will get it together,” added Pavlina.

Donations can be made via GoFundMe. Search 'Will you help save William's life?'