Every February I write an informative letter about “Congenital Heart Defect Awareness Week.” Inspired by the Congenital Heart Information Network, the intention has been to honor heart children and adults navigating life and the medical system, commemorate brave individuals who have fought and passed, offer resources to families, and encourage community action and funding that will ensure the healthy future I expect for my daughter Cora and her heart peers. In reproducing the list of resources, I send thanks for the advocacy and support we have appreciated for the last eight years, and for the ability to share these services. In recent years Cora’s name has been absent in an attempt to balance advocacy and respect for her privacy. Cora has become proud of her heart and has expressed interest in sharing her own story in the hope of helping others, knowing the support she has received from incredible medical staff, volunteers, family and friends. Continue Reading →
