My Child’s Legacy
Parents ask, Did my child leave a legacy?
Grief counselor Nancy Frumer Styron discusses how parents struggle with the question of whether their child left a legacy. Older children may leave a concrete legacy, and then there is the emotional legacy of who this person was and what they've left others. Several parents share their perspectives of their children's powerful legacies. "This connection to other people and other people's stories, I can be thankful for that."
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."
Abby is helping other families
The mother and father of a 5-year old with Leigh's Disease, a mitochondrial condition, talk about how they have adjusted to caring for Abby and how they have taken to advocacy and sharing so they can help other families. Abby is inspiring people. And her participation in the study drug is going to set up the next family that comes along.