SANFILIPPO Syndrome is a rare and terminal genetic disorder which is often not apparent at birth but signs and symptoms develop with age as more cells become damaged by the accumulation of materials within the cells.
It is caused by the body's inability to produce specific enzymes that normally, help to break down and recycle materials in cells.
In individuals with Sanfilippo Syndrome, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body.
As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system, that leads the affected children to move into the vegetative state as they get older.
The sister of Nikita Pilipenko, the Balbriggan boy affected by the syndrome, said: 'Doctors told us that Nikita is not going to live pass his teenage years and that there is still no cure for the disease and it's not going to be found any time soon.
'Since that Summer Nikita kept on losing all his abilities to talk, think, understand, walk, eat, basically everything that normally developed person would be able to do.'