You Are Not Alone
Losing a loved one, especially a child, is an indescribable pain - one that no family should have to face. Grief is complex, and no two experiences are the same. In the early days, feelings of shock, numbness, denial, and confusion can act as a buffer against the full weight of loss. Over time, emotions such as sadness, anger, guilt, and loneliness may emerge. However you process grief - whether openly sharing or holding emotions close - know that there is no “right” or “wrong” way to mourn.
Be patient with yourself, and extend that patience to those around you. The grief of siblings, extended family, and close friends is real, too. Let them know they are loved, and seek support when you need it - whether from your community, loved ones, or with professional guidance.
FamilieSCN2A is here to walk alongside you, offering a space for connection, remembrance, and understanding. Below, you’ll find resources to help support you in whatever way feels right for you.
Need support or have questions?
Reach out to our Bereavement Support Committee:
Angie Weaver and Tracy Umezu
Additional Resources
Ways to Remember and Give in Memory
Many families choose to support the FamilieSCN2A Foundation in memory of their child. Whether through donations, special initiatives, or participation in events, families have found that staying involved in the SCN2A community is a way to maintain a meaningful connection - to their child and to a community that feels like family.
Gifts Made in Memory
A meaningful way to remember a loved one. Contributions made in memory of an SCN2A warrior help fund research and provide support to families.
Donations in Lieu of Flowers
Some families request that donations be made to the FamilieSCN2A Foundation in place of flowers, creating a lasting impact in their child's memory.
Creating Something Special
Families sometimes reach out to the Foundation to start initiatives in their child's name, such as Warrior Wednesday or Brooks’s Birthday Club.
Fundraising in Their Memory
Some families choose to fundraise through social media or in-person events on their child’s birthday, or by creating a team for the Warrior Challenge.
Volunteering and Community Involvement
Families may choose to volunteer, attend the conference’s bereaved SCN2A Family Track, or get involved in other meaningful ways.
Staying Connected
If you need to update the information the FamilieSCN2A Foundation has about your family or would like to be added to our bereaved families mailing list, we are here to help. Please reach out to Amanda Gale, Program Manager, to receive updates, invitations, and resources that are meaningful to you.
You will always be part of this community and your child will never be forgotten.