Theme: Shared Decision-Making

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

Page: 5 of 5

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.

For each intervention, we asked, “Is t...
The Medical Team: You want a sense of be...
It becomes about a good fit.
You can change your mind re treatment an...
We Are Going to Take One Day at a Time
I Want Straightforward Answers
You Can Say, “That’s Enough....
She is an individual, not a diagnosis.
It was very difficult to disagree with t...

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Theme: Shared Decision-Making

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

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