A decade ago, our 17 year old son Deacon was diagnosed with Tatton Brown Rahman Syndrome (TBRS), a rare genetic condition that affects only about 500 people worldwide. Like many families living with TBRS, our journey has been filled with uncertainty, medical complexity, and moments that have required us to be braver than we ever imagined.

At the age of 4, Deacon had his first open heart surgery to repair an Atrial Septal Defect. Then, for more than a decade, Deacon fought exactly 29 recurrent pericardial effusions. We looked everywhere to find answers and manage his pain. After years of doctor visits, hospital stays, research, and constant prayers, we found that most of our unanswered questions were finally answered with his diagnosis of TBRS.

On February 9, Deacon will undergo another major open heart surgery to remove an aortic aneurysm. Learning that our child has life-threatening heart condition is something no parent is ever prepared for. As we face this surgery, we are clinging to our faith and the hope we have in Jesus. The love and incredible support that our family, friends, and community have shown Deacon throughout his life has meant more to us than we can put into words.

Many people have asked how they can help. Our answer is simple and heartfelt: please keep Deacon in your prayers, and if you feel led to give, we ask that donations be directed to the Tatton Brown Rahman Syndrome community.

The TBRS community is doing work that directly affects families like ours. They are leading critical research to better understand why aortic aneurysms happen in people with TBRS, how to detect them earlier, and what the best surveillance and treatment options should be. We are proud to say that Deacon will be the first person with TBRS to donate his aortic tissue for research, which will help save lives.

Before families like ours came together, cardiac risks in TBRS were not fully recognized. Today, thanks to patient-driven research and the sharing of data, families and doctors are learning how to monitor these risks more closely and act before it is too late. Our family is deeply grateful for this progress, and we want to help ensure it continues.

Thank you for standing with Deacon, with our family, and with the TBRS community. We are so grateful for every prayer, every message, and every act of generosity. You are helping turn our fear into knowledge, and knowledge into better care.

With love and gratitude,
Kip and Emily

Carrying Deacon through Aortic Surgery with Love