However, when they were about 5 years old, the twins were diagnosed with a rare form of muscular dystrophy, known as Emery-Dreifuss syndrome. By the ages of 9 both boys had developed cardiomyopathy, a weakening of the heart muscle. Shane developed symptoms first. “Of course it was devastating,” says Sorboro. “One week we were at Cedar Point riding roller coasters, the next week he was quite sick.” Doctors soon detected the same condition in Alex.
Both Shane and Alex suffered strokes from the condition and required heart transplants. Shane received a new heart in March 1998, followed by Alex in July 1998. “They were both very lucky, we got a heart for both of them,” says Sorboro. “It was a bad year, but ended up being a good year. Their heart function is beautiful now.”
Despite the hardships of having two sick children, Sorboro and her husband, David Sorboro, kept their morale high. “You just deal with it,” she says. “It was like, OK now, we know what we’re dealing with, and you take it one day at a time. You just pray and hope for the best.”
Today Shane and Alex are your average teenagers, attending Cuyahoga Community College with plans to transfer to four-year colleges. “They’re pretty much leading normal lives,” says Sorboro.
Sorboro credits friends and family with helping the family through difficult times. “We received tremendous family support,” she says. “Friends really stepped up, the whole community really stepped up.”
Sorboro also realized the importance of an organization like the American Heart Association. “I never realized how much the American Heart Association did,” she says, citing the research and funds for equipment the AHA provides.
The experience prompted the Sorboro family to share their story with the American Heart Association to raise awareness. In 2006, the family raised $44,000 for the AHA, and they regularly counsel other families. “When we were in this situation our biggest help was talking to other families who have been through this,” says Sorboro. “Now we try to help other people. We kind of turned this into something positive.”