Theme: Clinical Trial: Emotions

Clinical Trials: Our expectations is to buy more time. (CLN2 / Batten)

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Clinical Trials: Our expectations is to buy more time. (CLN2 / Batten)

Parents of two sons, one of whom has CLN2 (Batten disease) share that their goal with the treatment is to slow down the disease progression and maintain quality of life so as to have more time with their son. “There are things that are coming that we will have to deal, not everything is fine.” Dad stresses the importance of getting information, including from other parents, to set realistic expectations.