The mother of a 6-year-old Massachusetts boy who is waiting for a heart transplant is urging other parents to consider organ donation.
Monday marked Carlos Rolon's 52nd day staying at Boston Children's Hospital.
The Worcester boy, who loves video games and dancing, has an unbalanced atrioventricular canal defect – an abnormality of one of the four chambers of his heart. His mother, Sheena Cossette, knew during his pregnancy that her son would need extensive medical care.
"They had told us there was a probability of five surgeries by the age of 5," Cossette said. "Carlos had four by the age of 2, and then it was shut down and determined that transplant would be the best option."
On Aug. 31, Carlos was admitted to Children's with an infection. He has been vomiting daily and his appetite is very low. He will not be able to go home until he receives a new heart, Cossette said.
Last year, more than 1,800 children nationwide received organ transplants, according to the Health Resources and Services Administration. More than 800 donors were kids. Because of Carlos' size, his donor must be another child.
"I tell myself every day, another child has to die for my son to live," Cossette said. "But again, that child will live on through my son."
Cossette spends several days each week at her son's bedside, sleeping over until she needs to head to Worcester to go to work and take care of her other children. Carlos' father also stays with him.
The family tries to keep Carlos upbeat. Cousins play video games and chat with him from his hospital room. Two young friends visited him at the hospital on his birthday.
Since being admitted to the hospital, Carlos' status on the transplant list has changed. He is now near the top of the list.
"We have good days and bad days, but we keep our faith," Cossette said. "I think the hardest part is not knowing."
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