Truist for Kennadi4 Members
Why We Walk
2020 Waccamaw Area Heart Walk Digital Experience
Truist for Kennadi
As many of you know, my niece Kennadi was born with a rare genetic heart condition called Timothy Syndrome. Timothy syndrome is characterized by a heart condition called long QT syndrome, which causes the heart (cardiac) muscle to take longer than usual to recharge between beats. This abnormality in the heart's electrical system can cause severe abnormalities of the heart rhythm (arrhythmias), which can lead to sudden death. Some people with Timothy syndrome are also born with structural heart defects (cardiomyopathy) that affect the heart's ability to pump blood effectively. As a result of these serious heart problems, many people with Timothy syndrome live only into childhood. In about 80 percent of cases of Timothy syndrome, the cause of death is a severe form of arrhythmia called ventricular tachycardia, in which the lower chambers of the heart (the ventricles) beat abnormally fast, often leading to cardiac arrest and sudden death.
The stress that this has caused my sister Stephanie throughout her pregnancy up until this date is insurmountable. Kennadi has been in great hands with her doctors at MUSC but because her condition is so rare, it has taken extra time and care to provide the correct treatment. She will be schedule for surgery soon to have an ICD implanted. An ICD is a battery-powered device placed under the skin that keeps track of your heart rate. Thin wires connect the ICD to your heart. If an abnormal heart rhythm is detected the device will deliver an electric shock to restore a normal heartbeat if your heart is beating chaotically and much too fast. With Kennadi only being about 21 months this will make the surgery more challenging.
Kennadi is the happiest baby I have ever met and you would never know that she had any type of condition. She loves to sing "The Wheels on the Bus" and laughs at every opportunity. Her constant smile brings joy to anyone that she encounters.
Please consider joining my team or donating to help keep the research going for Kennadi and so many others that suffer with rare heart conditions.
Thank you all for your help and support!!