HAMBURG, NY - As prom season winds down, a special "2nd Chance Prom" is being held Saturday night at the Southtowns Catholic School to raise awareness about a silent killer, and honor a victim of it who may well have been attending her first prom by now....had she lived.
In late September of 2001, a few weeks after starting kindergarten at this school, 5-year-old Madison McCarthy went to use the bathroom and never returned after she collapsed and died.
Madison suffered a sudden arrhythmia, due to a genetic mutation, which caused a rare heart condition called Prolonged QT.
"It's a needle in a hay stack. But when it hits, it is death," said Dr. Daniel Pieroni, who retired as the chief of pediatric cardiology at Buffalo Women and Children's Hospital.
Madison's Parents, Michael and Suzy McCarthy, believed that had there been something now common in schools-an automated external defibrillator (AED) - Madison might been saved.
So amid their grief, they started the Madison McCarthy Cardiac Care Coalition for Children, making it their goal to get one in every school.
In their effort to make the tragedy of their loss serve the living, they lobbied for laws to require the life saving devices in schools and other public places, and spearheaded countless fundraisers over the years, to buy them.
The foundation has been able to fund roughly 400 of them so far, which have been credited for saving close to 100 lives.
The idea for the latest fundraiser in the form of a prom came from Suzy McCarthy's friend Jill Redman, who met the McCarthys several years after their daughter, who now would have been 17, had passed away.
"So we're having a prom for her...we feel like it's honoring her," Redman said.
With the original goal of placing AED in schools throughout Western New York having been met, the focus of foundation has now shifted somewhat, to screening as many kids as possible for the condition which claimed Madison, and which can't be found through a routine physical.
At the screenings, the parents of the children are asked questions regarding their family history, and if there is enough concern they are given a free EKG and, if concern warrants, a free echocardiogram.
"Parents feel very comfortable when they've taken their child to the doctor and everything looks good..but pediatricians don't screen for sudden cardiac death," explained Redman. "They'd have to do an EKG and not many pediatric offices have those."
"And that's a problem," said Dr. Pierone, "because these kids all appear perfectly fine. But when you hook them up to the EKG machine, you can see the Prolonged QT interval."
Besides being friends with the McCarthys, Redman is also a nurse who along with Dr. Pierone, is part of a team of medical professionals, who volunteer their time to conduct the screenings.
In the year since they began, they have found two children who had the same condition that Madison did, and who may well have suffered a similar fate, had they not been checked out.
"If we can detect the problem, these kids can be helped," said Dr. Pierone, with medication or the installation of an implantable cardioverter-defibrillator (ICD) a tiny device that is placed in the body much like a pacemaker.
"And they will never have this problem again," said Redman. "We can prevent a parent from burying a child."
Meanwhile, the McCarthys continue their push for passage of the NY-CPR Bill, which would require CPR training for all students in the state before they graduate high school.
The largest free screening for children ever conducted by the group will be held on Friday June 28 from 4-8pm at the field house at Ralph Wilson Stadium in Orchard Park.
Tickets for the 2nd Chance Prom can be purchased at the door the night of the event, Saturday June 1st, at the Southtowns Catholic School 2052 Lakeview Rd. in Lake View. The "thrift shop" style prom runs from 7-11pm.
Click on the video player to watch our story from 2 On Your Side Reporter Dave McKinley and photojournalist Norm Fisher from Eden. Follow Dave on Twitter: @DaveMcKinley2