ABSTRACT
Juvenile Batten Disease is a progressive and terminal neurodegenerative illness that gradually deprives children and adolescents of mental and physical faculties, until they die by the end of their adolescence. This chapter highlights issues for longterm art psychotherapy accompanying young clients through the stages of their illness. It describes how making art facilitates clients unable to speak to express and work through their illness-related fears and complete vital ‘life tasks’ in their remaining years. Addressing the need for an adaptive and active therapist in response to the clients’ physical and mental decline, the chapter discusses the specific countertransference that the illness evokes and how the clients’ art objects constitute lasting mementos of their existence. The juvenile type of Batten Disease, JNCL, affects children from around the age of six. The literature on JNCL seldom addresses whether children are aware that their condition is terminal; as the fatal diagnosis remains undisclosed to many of them, this is a critical concern.
