Hi, my name is Jace Fasburg. I am 5 years old and was born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome. This means, I was born with Half a Heart. I only have a single ventricle. So, my heart is not able to oxygenate my blood like everyone else's.
I required Open Heart Surgery right after I was born in order to live. In fact, I went into Cardiac Arrest as they were prepping me for my 1st Open Heart Surgery! Thankfully, my amazing heart surgeon saved my life on that operating table, then went on to perform my 1st Open Heart Surgery.
A typical Single Ventrical child will require a series of 3 Open Heart Surgeries. (The Norwood, Glen, and Fontan). I have underwent 7 Open Heart Surgeries and a Pacemaker implantation all before the age of 5!
These surgeries are not a permanent fix for my heart, but they do extend my life. We are not sure when, but eventually, I will need a heart transplant and most likely a liver transplant too.
But wait! There is some amazing research being done! A man named Dr. Mark Rodefeld has invented a device called a Fontan Pump. This pump could save my life without me needing a heart tranplant! The only thing is, the Fontan Pump still needs a very important piece. A battery that can be implanted.
Right now, Dr. Rodefeld is able to run this pump on a highly sofistocated electrical system that would requre a patient to be hooked up to a device with wires at all times. Although very impressive. Dr. Rodefeld is doing research to invent an implanted battery that can handle the Fontan Pump, where patients are able to swim, travel, and more! Once invented, the device would need to go through clinical trials before it could be FDA approved.
Did you know all funds raised by the West Michigan Congenital Heart Walk go directly to the The Children's Heart Foundation for CHD research. Some of these funds have been used to fund Dr. Rodefeld's research which have led to the invention of the Fontan Pump! A lot of work still needs to be done and a lot of funds need to still be raised, not only for the Fontan Pump, but for many other research projects that will benefit so many heart kids!
The West Michigan Congenital Heart Walk is on August 2nd. We would be so grateful if you would consider donating to this wonderful organization. Your donation could save so many heart kids lives, including mine!
You can also join Team #JaceStrong, help us raise funds, and walk with us!
We're truly grateful for your visit to our team page!
Our team is walking with purpose this year—celebrating 30 incredible years of The Children's Heart Foundation funding research that saves lives! Every 15 minutes in the United States, a baby is born with a congenital heart defect, making CHDs the most common birth defect in our country. For three decades, CHF has been the driving force behind the treatments and surgical advances that have transformed survival rates and given countless children with CHD the chance to thrive.
The Congenital Heart Walk is dedicated to making this impact continue. Our mission is clear—we aim to raise funds to support The Children's Heart Foundation's quest to advance the diagnosis, treatment, and prevention of CHDs by funding groundbreaking research that improves outcomes, reduces complications, and helps Heart Warriors live longer, healthier lives.
We invite you to join our team in honoring this legacy. By supporting our team or walking with us, you're contributing to research that can save and enhance the lives of infants born with CHDs, as well as children and adults living with these conditions. Together, we're part of a 30-year story of hope—and we're writing the next chapter. Your support makes a significant impact, and for that, we want to say a heartfelt thank you.
Will you join us in making a real difference? Please consider supporting our team or walking with us. Every step we take together celebrates how far we've come and funds the miracles still ahead.