My Child’s Legacy

"Now I can have the long view towards finding a treatment or cure."

The mom of an infant diagnosed with Gaucher Type 2 reflects on how she focused on quality of life during her daughter's short time. But now that she has died, the mom can look out towards the long road to a cure.  

William’s Legacy

A mother and father describe the various ways they are memorializing their 8-year old son who has recently died. Part of his legacy is that mom is now studying for her MSW to help future families.

After people see how we handled death, they see death differently.

A couple whose daughter has died talk about their family’s experience has shown others that they can do it do and that it can be beautiful: the peace that we have, the strength, life continuing.

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."

Kristie inspired people to look at life differently.

Parents of a 16-year old who died from leukemia talk about the impact of her life on others, including people’s commitment to prayer and to being positive.

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.

"Now I can have the long view towards finding a treatment or cure."

William’s Legacy

After people see how we handled death, they see death differently.

Parents ask, Did my child leave a legacy?

Kristie inspired people to look at life differently.

I am entirely who I am today because of Ben.

Abby is helping other families