Westport Resident Raises Over $20,000 For Heart Defect Research

WESTPORT, CT — To mark National Heart Month and Congenital Heart Defect Awareness Week, JoyRide Cycling + Fitness Studio hosted the second annual Cycle for Heart, an indoor cycling fundraiser, led by JoyRide co-owner and lead instructor Rhodie Lorenz on Feb. 11.

Spearheaded and organized by Westport resident Britt Sheiber whose toddler son, Evan, was born with a life-threatening congenital heart defect called Hypoplastic Right Heart Syndrome or “half a heart,” this event raised more than $20,300 for single ventricle research at Boston Children’s Hospital, according to a release.

“On the day I heard one of my identical twins would have ‘half a heart,’ my world stopped,” Sheiber said in a release. “I remember wondering if I would be sad every single day for the rest of my life. Little did I know my son would show me that each day is beautiful and each day there is a reason to be happy and thankful. I started to realize that in darkness there is always light and it began with all of the love and support I received from my community.”

Soon after he and his twin brother were born in September 2016, Evan underwent the first of two planned open heart surgeries, improved immediate symptoms of the underlying heart defect, but did not correct the defect itself. His next planned surgery will be when he is three-years-old.

The money Sheiber and her husband Bret’s friends, family and community raised helped fund research led by Dr. Rahul Rathod, the pediatric cardiologist at Boston Children’s Hospital.

“It’s hard to believe that you can live with half a heart,” Rathod said in a release. “But this is the reality for Evan Sheiber and many patients born with only one pumping chamber (a single ventricle). This is a life-long condition that usually requires multiple procedures and open heart surgeries, the last of which is known as a Fontan operation. Over the past few decades we have learned a lot about how to help kids survive with a single ventricle. Now these kids are becoming adults and it’s clear there is still more to learn.”

Rathod and doctors at Boston Children’s Hospital have made it their mission to identify the children and adults who are at risk and help them lead a full and healthy life.

In addition to creating an international registry, Rathod is leading a FORCE study (Fontan Outcome Registry using CMR Examinations) in which he has assembled a team of doctors from Texas Children’s, Children’s Hospital of Philadelphia, Toronto Sick Kids, University of Michigan, and Nationwide Children’s Hospital.

Additionally, there are 13 additional hospitals in North America and Europe that will participate in this study.

The event also included a fundraising auction which included items from Boston Red Sox tickets and autographed sports memorabilia to gifts from local stores and businesses, including JoyRide, Mitchells, Lucy’s, She La La, Soleil Toile, Benefit, New Beauty Wellness, Dr. Marilyn Geni, Sam Allen Interiors, Organic Market, Bar Taco, Rizzutos, The Granola Bar, Fleishers Craft Butchery, Sherwood Diner, Double L Market, Saugatuck Sweets, Kidville Westport and the Westport Fire Department.

“When a community like Westport can come together for a cause to save someone’s heart, I call it a ‘modern day barn-raising,” Lorenz said in a release. “We can most effectively create change and solve problems when we join forces and combine efforts. We are so proud to be a part of it!”

To donate to Evan’s Heart Fund, please visit this link.

Photo credit: Marni Lane