The James Doss Memorial Foundation was created in 2022 by Carlee and Randy Doss. In 2018, their son James was born with a Congenital Heart Defect called Hypoplastic Left Heart Syndrome (HLHS). James was with his family for six weeks in the Cardiac ICU at Cincinnati Children’s Hospital Medical Center when he passed away. Since then, Carlee and Randy have been dedicating much of their time connecting with families affected by CHD which led to the start of their charitable efforts.
We have been featured in CHD Magazine where we describe our grief journey and talk about our goals. We have also been able to share our story through a podcast called The Hope and Courage Podcast for CHD Parents. We hope to keep empowering bereaved families to speak up and feel connected to the CHD community.
”The terrible truth is that CHD is the #1 cause of birth-defect related deaths. We cannot stop this from happening but we can offer a small beacon of hope to families in need. After we lost James, the support from our friends and family encouraged us to start helping others. This act of giving is where we find peace and I know James would be proud of that.“ -Carlee Doss, President
James Doss Memorial Foundation's mission is to support and uplift families who have lost children to Congenital Heart Disease. We aim to normalize the grieving process by providing assistance with funeral expenses and financial support towards creating meaningful memorials. By alleviating the burden of financial strain, we enable families to focus on honoring and remembering their beloved children.
In addition to our immediate support, we aspire to advocate for and establish new end-of-life care initiatives within hospitals in our community. We strive to improve the quality of care and support provided to families during their most difficult moments, ensuring a compassionate and comforting environment for both the child and their loved ones.
Through our efforts, we aim to foster a society that acknowledges and respects the journey of grief, encouraging open conversations and healing opportunities. We hope to empower families to remember their children with love, dignity, and without the added burden of financial stress. Together, we can create a compassionate and inclusive space where families can find solace and support in their time of need.
What is CHD?
Congenital Heart Disease is the lifelong impact of being born with a Congenital Heart Defect. A baby has a 1% chance of being born with a heart defect, that is 1 in 100 babies.
25% of children born with CHD need heart surgery or other interventions in the first year of life to survive.
#1 cause of birth defect-related deaths.
There is no cure. CHD is a lifelong disease requiring ongoing specialized care.
CHDs are 50 times more common than childhood cancer.
Costs for hospitalizations related to congenital heart disease were more than $6 billion in 2013.
*Facts from conqueringchd.org
Resources for CHD
The Heart Institute at Cincinnati Children's Hospital is where patients benefit from exceptional heart specialists close to home, and families across the country can access unique condition-specific programs.
Callie's Giving Heart Foundation is inspired by Callie's brave battle against a rare congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS), Callie’s Giving Heart Foundation is dedicated to providing families with the resources they need to empower them in their fight against congenital heart defects (CHD).
Congenital Heart Alliance of Cincinnati's mission is to inspire heartfelt hope in patients and families impacted by congenital heart defects, as well as the medical practitioners that care for them, through the funding of groundbreaking research, global collaboration, and holistic well-being initiatives.
Hope and Courage, a book authored by Tom and Kat Hansen, draws from their experience as they equip, motivate and inspire parents like themselves to prevail through the challenges that come with being the parent of a child with CHD. Their empathetic storytelling and six practical life lessons will guide parents through any hardships they may endure, while preparing them for what to expect along the way. Tom and Kat Hansen also host a podcast, Hope and Courage, that you can find through most podcast platforms.
The Heart Collection and CHD Magazine is a collective of CHD authors and creatives who have joined forces to bring resources to the CHD Community.