Upstate 9-year-old in need of heart transplant

GREENVILLE, S.C. (FOX Carolina) - Marcelino Leon looks like any other nine-year-old. He enjoys playing with legos and using the pieces to build an imaginary world. His older sister, Alvalon, is like his second mom. She was in high school when he was born. She has many fond memories of him as a child.

“Marcelino was very active and outdoorsy,” Marcelino’s sister Alvalon Allen said. “He had an ATV and loved to ride.”

But Marcelino has been through challenges that most of us can’t imagine. He was diagnosed with hypoplastic left heart syndrome at birth. It means the left side of his heart doesn’t form properly. He has undergone three open heart surgeries due to his heart defect. The family brings oxygen tanks with them on trips to help him breathe. In the last year he had two strokes, which caused him to lose movement in his right arm.

“After the strokes, with the right side affected, he just wasn’t able to get out like he used to,” Alvalon Allen said.

Marcelino carries around a backpack with medicine to improve the blood flow of his heart. A PICC line is attached to his arm so he can receive injections of the treatment everyday. It’s keeping him alive, but is a temporary fix.

“They always told us a heart transplant would be in the works, so we are there now,” Avalon Allen said. “I think the strokes contributed to increasing the timeframe for it.”

Alvalon is working with the nonprofit Children’s Organ Transplant Association to try and raise money for a heart transplant

“It can be over a million dollars with pre and post medical care, doctor stays, doctor fees and hospital stay,” Alvalon said.

They have insurance, but will still have to front a lot of the costs out of pocket. Even if they raise the money there is still no guarantee he will receive a heart. But they are holding out hope and faith. Next they are heading to the Medical University of South Carolina for more treatment and to wait for a heart transplant.

“His condition is deteriorating, and the doctors don’t want to take any chances,” Avalon said. “The smallest cold can cause him to be admitted into the hospital.”

The family is holding out hope that a heart transplant will come through. Marcelino says the first thing he will do with a new heart is go to the water park and ride his ATV. He also has hopes of getting his drivers license someday.

“He is going to show the world what he is really made of,” Alvalon said. “He is a fighter. I promise he won’t disappoint. He will be somewhere doing something great and living his best life.”

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