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This week Kinnelon Mayor, Robert W. Collins signed a proclamation to name February 7-14th Congenital Heart Defect (CHD) Awareness Week in his town.
Town resident Kim Shadek requested the mayor include the town of Kinnelon to observe this week as CHD Awareness Week. Shadek is the executive director of the Congenital Heart Defect Coalition (CHD Coalition). Her oldest son, Daniel, who is a student at Stonybrook School in Kinnelon, was born with a very complex congenital heart defect called Hypo-Plastic Left Heart Syndrome (HLHS).
Since Daniel’s second open-heart surgery at the age of just five months she and her husband Kenneth have been advocates and fundraisers for CHD.
“When Daniel was first diagnosed at just 36 hours old we were told that there was an 85 percent chance that he would not survive to the age of 10,” Shadek said, and that just was not an option.
So she and her husband have made it their mission to raise as much money for congenital heart defect research through the CHD Coalition in hopes that a solution (there is no cure for HLHS) be found to allow Daniel to live a long healthy life. Daniel, who has beaten the odds so far, turns 10 on March 11, 2013. He is currently living with ½ of a functioning heart.
HLHS leaves the left side of the heart so severely undeveloped that it is not able to function. Without surgical intervention immediately, a child born with HLHS will not survive. However, with a series of three open-heart surgeries which are performed over a three-year period, these children are given a chance at life.
The oldest living survivor is just 31 years old.