OLLIE HINKLE HEART FOUNDATION
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Mission Statement
The mission of Ollie Hinkle Heart Foundation is to address the unmet needs of heart families while transforming the future of pediatric heart care.
About This Cause
Who We Are Ollie Hinkle Heart Foundation (OHHF) was founded in 2013 after Mark and Jenn Hinkle lost their 13-month-old son—Ollie Hinkle—to his battle with Pediatric/Congenital heart disease (P/CHD). Through a blend of community outreach addressing social determinants of health, mental healthcare access through Ollie’s Branch, support for technology and research, and collective community building and education through Take Heart, our mission is to address the unmet needs of heart families while transforming the future of pediatric heart care. Our vision is that every heart child and family will be wrapped in love to eliminate the traumas endured by living with a chronic illness. Since inception, we have reached and served approximately 9500+ families on a shoestring budget, meeting unmet care needs, financial support, community engagement, and holistic support for the entire family. Initially serving as a tribute to their son, OHHF has grown beyond that initial effort, expanding to a complex offering of programs nationally, including a new collaboration with the American Heart Association to bring awareness around sudden death and the need for CPR education through OHHF’s CPR at the Bar annual event. Today, OHHF helps 2,000 families across 50 states and Canada annually. Statement of Need P/CHD is the most common birth disability in the world, with an estimated 1 in 100 babies born with a P/CHD. 25% of these babies will need surgery or other medical procedures in the first year of their life. In the United States alone, more than a million children live with this congenital disability. Previously, the survival rate for many of these babies hovered around 25%. Medical advances have improved the survival rate for babies with critical and non-critical P/CHDs; today, nine out of ten live into adulthood. Despite these children having 3–4 times more socio-economic, physical, and psychological needs than those with other types of childhood illness, their conditions are some of the least recognized and lack funding for vital support services in our healthcare systems. Pediatric heart disease is a chronic, lifelong illness endured by the entire families it affects. P/CHD impacts a child’s long-term survival and every aspect of their life, including job prospects, finances, insurance, psychosocial health, and other facets of life that children and families without P/CHD otherwise take for granted. With no roadmap to help them navigate, families face many hardships out of their control. Children and their families are at increased risk for mental health disorders as they cope with excessive medical appointments and cardiac procedures, long and multiple hospitalizations, and increased risks of other illnesses. Due to youth with P/CHD enduring multiple and ongoing events of trauma due to the nature of the disease, this results in significantly higher rates of anxiety, depression, and ADHD—which can be up to 7 times higher in kids ages 4–9 and “non-Hispanic Black, Hispanic, and Asian American children were significantly less likely to be diagnosed or treated for anxiety and depression than white children.” Many parents of children with P/CHDs also struggle with mental health disorders. Several recent studies revealed that up to 30% of parents of children with critical P/CHDs have post-traumatic stress (PTS) symptoms, and 25–50% of them reported depression and anxiety symptoms. In addition, parents must face various extra physical, financial, and other practical challenges. Healthcare providers understand that parents' untreated, compromised mental health can adversely affect their ability to care for their children. This leads to long-term cognitive, health-related, and behavioral problems in children. Yet, the emotional and mental health needs of caregivers of medically complex children often remain overlooked in our current healthcare systems. The impact of healthcare inequalities on top of the statistics for P/CHD already mentioned is why supporting medically complex children and their families/caregivers early on and throughout life is so important. This requires building a network of partnerships with local, regional, and national community organizations that support the needs of this community through creating awareness, providing education, advocating for change at a legislative level, and providing families with the necessary tools and resources to be empowered. These actions create a safety net for families with medically complex children and allow them equitable access to resources. It will take this work and more to improve the lives of children with P/CHD and their families in measurable ways that create impactful change. Health and longevity are at the center of our work. All too often, the reactive, not proactive, nature of healthcare leaves families of medically complex children to endure and navigate their mounting unmet needs alone. This is why OHHF’s programs and services focus on illness prevention education, treatment and surgical support and education, caregiver support, and reduction of health disparities, as we know how these needs stack on top of other causes of mortality, compounding the risks for the population of children and families we serve.