In the Late Infantile Form of MLD the infant’s development starts to slow down between the ages of 6 months and 2 years; he/she may become rather unsettled and appear physically floppy (hypotonic); over the following months motor skills will not progress as expected, and, indeed skills that have been learnt will be lost. Over the course of the next few years the child becomes as dependent as a new- born baby again, usually developing stiffness of the legs ( spasticity) and eventually loses all understanding or real awareness of his/her surroundings; very rarely epileptic seizures may develop. The condition is not a painful one and the child will be unaware of what is happening in the later stages of the disease. The brain’s control of the muscles responsible for chewing, coughing, swallowing etc. eventually becomes affected so that assistance with a feeding tube may be needed, and chestiness will develop and may lead to infections and increasing physical weakness. Eventually the combination of the diseased brain and physical weakness becomes too great to sustain life, and death usually occurs between the ages of 5- 8 years. Parents and carers will be aware of the child’s increasing frailty, and death is usually relatively peaceful and expected when the time comes.