Abstract
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.
Every Childhood Disease Deserves a Cure
TRACY VANHOUTAN
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Acknowledgments
There are many people who deserve to be thanked here. Batten researchers: thank you for your countless hours reviewing proposals and for patiently teaching me about this disease. Emil Kakkis: for helping me understand the regulatory process better and for inviting me to become a part of significant change. Donors: for your continued support of Noah’s Hope which make our research and policy initiatives possible. Mammo and Hoppa: without your time, support and counsel, we would be lost. My wife, Jennifer: your strength amazes me. Thank you…for everything. To the staff of BDSRA: you are the light in a world of darkness. And a special thank you to Lance Johnston, former Executive Director of the BDSRA. Lance is the major reason we have been able to accomplish all that we have. A man with incredible reserves of compassion and knowledge, Lance likely touched more lives than he will ever realize.
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VanHoutan, T. (2014). Noah’s Hope: Family Experiences of Batten Disease. In: Bali, R., Bos, L., Gibbons, M., Ibell, S. (eds) Rare Diseases in the Age of Health 2.0. Communications in Medical and Care Compunetics, vol 4. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-38643-5_17
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DOI: https://doi.org/10.1007/978-3-642-38643-5_17
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