Suggested Organizations that can Provide Help

  • Parents and Families

Our Parents suggest these organizations that can provide help:

  • Sisters by Heart | Supports newly-diagnosed HLHS families (both expectant and newborn) by providing complimentary care packages and a supportive network of HLHS families.
  • Beads of Courage | Through the use of strings of beads representing medical procedures, helps children with serious illness record, tell and own their stories of survival.
  • Mended Little Hearts | A support program for parents of children with heart defects and heart disease. Offers resources and a supportive network of families.
  • The Erika Kate Foundation | Provides short-term assistance to families in the midst of medical crisis, working with social workers in pediatric heart centers nationwide to bridge the gap for those whose short-term needs exceed available resources.
  • Icing Smiles | Provides custom celebration cakes and other treats to families impacted by critical illness of a child (provides cakes to both the affected child and siblings).
  • Congenital Heart Information Network | National organization that provides reliable information, advocacy, support services, financial assistance and resources to people affected by CHDs. Also includes information on Spencer’s Fund, which provides help to families affected by CHD’s by providing financial assistance with expenses incurred during extended or far from home clinic appointments and hospital stays.
  • Midwest Heart Connection | Midwest Heart Connection is a 501(c)3 nonprofit organization that supports families affected by all types of congenital heart disease. Midwest Heart Connection’s mission is to support individuals affected CHD by providing access to others with congenital heart disease, raise awareness of CHD in the community and raise and provide funds for pediatric cardiology research, education and treatment resources so that more children with heart defects will survive, live longer, and lead an improved quality of life.
  • Heartfelt Couture | Creates personalized hospital gowns and prayer pillows for children / recovering from open-heart surgery and hospitalizations.
  • Little Hearts | Provides support to CHD families by way of an Annual Member Picnic, Awareness Information & Suggestions, Awareness Products, Discussion Board, Fundraising Ideas, Meetings, News Email Group, Newsletter and Parent Matching Program.