Capital Region 7-Month-Old Who Died Of Rare Heart Defect Was 'So Amazing, Strong,' Mom Says

The baby boy from Albany died Friday, Feb. 23, following a seven-month battle with a congenital heart defect known as Tetralogy of Fallot, his mother Sha’Dasia Alston told Daily Voice.

It actually consists of four different problems that affect the heart’s structure, disrupting blood flow to the rest of the body, according to Mayo Clinic. The condition is usually diagnosed during pregnancy or soon after birth.

In Nalon’s case, he also suffered from pulmonary atresia, meaning the valve between his heart and lungs never formed. Instead, a solid sheet of tissue prevented blood from flowing from the right side of his heart.

“He also had severe bronchomalacia, which is actually what killed him,” Alston said. “His airway wasn’t growing with his body even with a tracheostomy surgery they had to do.”

Alston and the boy’s father, Collin Billingsley, spent months driving back and forth to Manhattan, where Nalon underwent two open heart surgeries.

“The surgeon did unimaginable repairs on his heart,” Alston said. Nalon ultimately survived a total of four surgeries in his short life.

“Before and after each one they didn’t expect for him to survive,” she said.

He spent his final days getting oxygen with the help of a ventilator. All throughout, Alston said her baby boy was “so amazing and strong.”

Now, the young couple must grapple not only with losing their son, but also with the mounting medical bills from Nalon’s extensive care.

Alston said the hospital helped with his funeral expenses, but she and Billingsley have been unemployed since the beginning of the year in order to make the 300-mile round trip to New York City for the boy’s treatment. They also have four other young children to care for.

Friends have set up a Meal Train fundraiser, where those who wish to help the family can schedule home-cooked meal or takeout deliveries.

"It's a caring way to ensure they don’t have to think about grocery shopping or preparing meals while going through a major life event," organizer Tori Corina said. "Anything will be appreciated."

In addition to his mother and father, Nalon is survived by his siblings Mae’Lani, Me’Lah, Ny’Lah, and Naomi.

“He will also be missed by his grandparents, aunts, uncles, doctors, nurses and everyone who came in contact with our warrior baby,” reads his obituary.

Funeral services are scheduled for 1 p.m. Friday, March 8, at New Comer Funeral Home in Colonie. 

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