NJ Twins Need New Hearts And Lots Of Generosity

By Consumers For Quality Care, on July 2, 2019

NJ Twins Need New Hearts And Lots Of Generosity

24-year-old twins Edwin and Edward Roman each need a new heart and a lot of generosity. The Romans have already had surgeries costing more than $2 million. The twins have cardiomyopathy, a condition that causes the muscles in the heart to enlarge and harden, which restricts its ability to pump blood through the body. The young men know just how deadly their disease is. Two years ago, their mother passed away from the same condition, HuffPost reports.

In 2018, Edward suddenly needed surgery, which included a 45-day hospital stay. He had a device implanted in his heart to help pump blood and control his heartbeat. After years of symptoms, Edwin needed the same surgery this year. His recovery took a month.

“As the time progressed, it got worse and worse, where the medicine couldn’t really help the heart function,” [Edwin] said. “Medicine can only work so long for a failing heart.”

Their surgeries cost $1.3 and $1.1 million. The brothers, who work together at a pizzeria in New Jersey, are insured but neither is sure what portion of their surgeries they’ll have to pay for out-of-pocket. Edward has Medicaid and says that while bills are still coming in, it seems like his coverage will pick up most of the cost. Edwin, who is privately insured, expects to owe around $400,000.

What they truly need are heart transplants, which would entail another million-dollar-plus surgery for each brother and unknown ongoing costs. Already, Edwin takes 11 prescriptions drugs and Edward takes seven.

The brothers receive a lot of support from their work and community. One of their coworkers, Quinn Butler, started a GoFundMe, which HuffPost highlighted for their “Life and Debt” series, for the brothers. Butler says he wanted to try and help raise some of the money the brothers need.

“What 24-year-old has $400,000 lying around?” Quinn asked.

So far, the GoFundMe has raised around $140,000.

With the help of professionals volunteering their time and expertise, Butler set up a trust to keep the money safe from creditors and taxes. Edwin and Edward are the beneficiaries of the trust and must apply for financial aid from the trustees. They’re also getting help from a local charity, The Other Fellow First Foundation, that’s run from the historic Summit Diner and provides small cash assistance to needy families in the area. The trustees and other local leaders also are trying to negotiate with the hospital to reduce the twins’ bills. 

While Edwin and Edward are lucky to have support and a boss who holds their jobs as they recover, they are still struggling. They find themselves needing money to help pay for things like rent. Physically, they can’t do the things they used to either. They have to be diligent to keep the incision sites from their surgeries clear and keep the batteries charged to keep the devices working. Their doctors hope the devices will give them each another 10 to 15 years before they seriously need a heart transplant.

But the Roman twins remain focused on the positive. The staggering amount of money they need to stay alive won’t stop them from living life in the meantime.

“What is there to be mad or get frustrated about?” Edward said. “We’re still happy. There’s no down part about us.”