CPN | For each intervention, we asked, “Is this going to benefit his quality of life or our family’s quality of life?”

For each intervention, we asked, “Is this going to benefit his quality of life or our family’s quality of life?”

Parents of a son with SanFilippo Syndrome share their decision-making framework. It wasn’t about ‘shoulds’. For example, we stopped tests that would tell us what we already knew, including swallow studies.