Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Lifelong Care Family Fund

The Lifelong Care Family Fund is a special fund for families who want the best future for their loved one with CHD.

The fund allows families to invest in ACHA programs designed to assure that those with CHD live a long and fulfilling life by guaranteeing lifelong health education, support and high-quality care. For children living with CHD today, nothing will be more important to their health as an adult than having access to recognized high-quality adult CHD care and the necessary tools to understand their medical needs as they transition into adulthood.

When you give $100 or more to the Lifelong Care Family Fund, the fund’s founding group of family members will match your donation.

Lifelong Care Family Fund: Letter from a Parent

A new path was blazed for our family when our child was born with CHDs. Requiring specialized medical attention at birth, she was just a few days old at the time of her first open heart surgery; her heart was the size of a walnut. Initially we thought only in terms of what the next hours would hold. Then days, months and, over time, we were able to think of her life in years. After our child’s third open heart surgery at age three, we finally allowed ourselves to dream of her future the way we had for our other children – school age, teenager and adult.

We are thrilled to say that our child is doing extremely well right now, but her future remains uncertain. That scares us tremendously. Thankfully, we found ACHA and realized that we are not alone in our concerns. Though she is still a child, we are grateful that a national organization is already addressing the issues we know she will face in the future.

We have learned from ACHA that living with CHD is a lifelong journey, and lifelong care and health education is key to our child’s ability to thrive. For now, as her parents, we are responsible for her medical decisions. Parents of children with CHD are warriors in finding the best information and pediatric medical care based on their child’s current needs. We hope to pass along what we believe to be the truth to those parents we meet: Investing in your child’s future is just as important as managing their present needs.

ACHA continues to help us identify information, resources and support that will help us guide our child in her transition to quality adult CHD care. ACHA offers many resources to help patients determine how to best care for themselves. ACHA’s educational resources like webinars, conferences and online newsletters provide information in a format that is easy to understand. As our child grows older, we will continue to teach her how to grab the reins and take control of her own healthcare. The day will come when our child will be managing her own medical care. Although we will be there to support her every decision, those decisions will be hers to make.

As the adult CHD population continues to grow, access to high-quality, specialized care to treat our child’s heart is imperative. Adults living with CHD now outnumber children living with CHD. This statistic inspires hope, as it means so many more of our CHD children are surviving to adulthood. But, it also brings a subset of the CHD population—adults—with issues different than that of our child. The United States continues to face a severe shortage of cardiologists trained on how to take care of these children when they leave childhood. ACHA works side-by-side with the top medical professionals to promote training in the emerging field of adult congenital cardiology, and to ensure that the care system our child needs is ready for her when she reaches 18. ACHA is leading the way for better care not just for today’s adults with CHD, but for generations to come.

We are thankful that there is an organization as passionate as we are about improving the quality of life and extending the lives of each adult with CHD. Our participation in ACHA and support of the Lifelong Care Family Fund is a natural step in my family’s CHD journey. As parents, we cannot afford to wait until our children are 18 to begin thinking about and planning for their life as adults. Our family wants to play a proactive role in advancing the lives of adults with CHD. After all, someday that will include my daughter.

My family and I will continue to support the efforts of ACHA, and encourage all families of the CHD community to join us in giving what they can to an organization dedicated to and at the forefront of pursuing advances, innovation and influence in the CHD community. It is the smartest investment parents can make for their child, grandparents can make for their grandchild, or siblings can make for their sister or brother.