Geared toward high schools and colleges, this yearlong, student-led fundraiser culminates in a day of dancing. Fundraising helps kids at your local Children's Miracle Network Hospital—Boston Children's (that's us!).
Thank you all for your continued support. We are in our fourth year of raising money for the FORCE fund at Boston Children's hospital. The FORCE fund is a registry for Fontan (half a heart) patients like our son Evan. To date we have raised $145k. I recently spoke to Dr. Rathod, Evan's cardiologist, regarding the status of the registry. First, he is so grateful and so impressed by the love and support you all have shown Evan. He expressed the need to raise money to help defray costs for the 7 children hospitals already committed to the Fontan Registry. Another 22 children hospitals are ready to sign up after the registry's launch.
Why is it important to us?
Our son Evan was born with hypo-plastic right heart syndrome, or half a heart. He has only the left side of his heart, which is now doing twice the work. There is a series of three open heart surgeries, all typically performed before the age of 5, which help prolong Evan's life, but it is NOT A CURE. These surgeries are palliative. Evan completed his "final" planned surgery last March, known as the Fontan. There are no other surgical options left for him. When his heart goes into failure the only option left is a transplant. A heart transplant typically lasts for only 10-15 years. We need better for him, better for all babies born with half a heart. We need to do better by focusing not just on survival but also on length and quality of life. We know that single ventricle patients are at risk for, but not limited to arrhythmias, cardiac arrest, protein-losing enteropathy, plastic bronchitis, stroke, and blood clots. We can do more for Evan and those like him. But it will take a community to get if off the ground.
We do not know the life expectancy of single ventricle patients, but we know we can do it better. The goal of the FORCE registry is to improve patient outcome by using the power of data to predict which single ventricle patients will do well and which ones will not as they grow older. This registry is a multi-center retrospective research study that will use imaging and clinical outcome parameters from all centers involved. The data will be entered into a database and then manipulated using CMR Examinations to predict patient outcome. Doctors can then do intervention, use medication, and change the trajectory. Single ventricle patients are at risk for, but not limited to arrhythmias, cardiac arrest, protein-losing enteropathy, plastic bronchitis, stroke, and blood clots.
Hospitals committed: Boston Children’s Hospital, Texas Children’s Hospital, SickKids Toronto, The Children’s Hospital of Philadelphia, Lurie Children’s Hospital of Chicago, C.S. Mott Children’s Hospital, and Nationwide Children’s.