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Navigating Medical Complexity Coping With Loss Neurojourney

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Home > Bereavement: Maintaining Connection, Continuing Bonds

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Theme: Bereavement: Maintaining Connection, Continuing Bonds

I am entirely who I am today because of Ben.

Page: 5 of 5

I am entirely who I am today because of Ben.

I am entirely who I am today because of Ben.

The father of a son with SanFilippo Syndrome share that their son’s legacy isn’t a cure for the disease but how he called his siblings and parents to grow and become wiser and more engaged people. “He gave us way more than we gave him. We got so much out of Ben.”

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