This chapter describes one family's experiences of coping with Batten disease, a rare condition which has afflicted two of their three children. The chapter, written by one of the parents, presents a powerful and personalised account of the initial diagnosis and prognosis, the daily consequences of caring for the children, family efforts to find effective treatments and promising research for the future.
CITATION STYLE
VanHoutan, T. (2014). Noah’s Hope: Family Experiences of Batten Disease (pp. 149–162). https://doi.org/10.1007/978-3-642-38643-5_17
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