Theme: Clinical Trial: Decision-Making

Clinical Trials: Our son and family’s road to the trial. No man’s land. (CLN2 / Batten)

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Clinical Trials: Our son and family’s road to the trial. No man’s land. (CLN2 / Batten)

Parents of two sons, one of whom has CLN2 (Batten disease), talk about how lucky they were, with Matt being the right age, to qualify for the trial. It was all about timing. And then they had to be ready for anything — to drop everything and move for the trial. There was no guarantee. So many ‘ifs’. So much waiting. Nerve wracking. “It was only when his port was being put in that we felt it was official.”