RI man waits for heart transplant
BOSTON – The Tin Man said, “if I only had a heart…”
It's something Steve DiSumma also needs.
He's been living in a Boston hospital for 8 months as a machine pumps his artificial heart for him.
He has the sounds from that machine for a heartbeat. A birth defect essentially grew his heart backwards, and since receiving an artificial one last June, he's been away from his home in Glocester, living at Brigham and Women's Hospital in Boston, waiting for a transplant.
“I'm just wondering if I'm ever going to get home either, sometimes I go through some tough times, some tough days, and sad days too. But I got to stay strong for my family,” he said.
Surrounded by love, Steve plays the waiting game. There's no telling when a heart donor may come through, and anticipating that call is agonizing.
“It could come in the middle of the night, it could come when I'm at work or at the mall. It could come anytime and it's only a matter of hours until he's going to be in surgery,” said his wife Jennifer.
“At school… we have a phone in our room… and every time it rings and the teacher talks a long time on it I'm like, please be the call!” said his daughter Gianna.
And even when that good news finally comes through, it'll still be tough for Steve to take.
“For me to stay alive someone has to die… yeah… I think of that a lot,” he said with a sigh.
The Glocester community has rallied around him, raising money to help cover medical costs: a whopping $300 for each medication he will need, not including the cost of the operation itself.
“Even with insurance it's like a mortgage payment,” said Jennifer.
“I helped make a fundraiser for him to help pay medical bills, and we made T shirts called DiSumma Strong, and that totally describes him, his will his determination, his strength, his endurance,” said his nephew John.
The next fundraiser is being held at the end of march by a local church. Meanwhile the family is trying to live as normal a life as possible.
“We like to stay in our pajamas a lot and watch TV, but when we watch a movie he ends up falling asleep!” said Gianna.
They aren't giving up hope.
“I'm waitin'… waitin'… positive… it'll come,” said Steve.
For more information on the fundraisers or to find out how to contribute visit: https://www.facebook.com/disummastrong