Keely Harris is doing everything in her power to bring light to an enzyme deficiency that almost took her grandson’s life.

Back in 2013, the Babylon Village resident said the “perfect storm happened” when her new grandchild, Brody, was born two weeks early in a Rhode Island hospital.

At first, he was a normal, healthy baby, until the next day when he experienced infant jaundice, a yellow discoloration of a newborn’s skin and eyes due to an excess of a toxin called bilirubin.

After a series of testing, it was discovered that Brody suffered from an enzyme deficiency called Glucose-6-Phosphate Dehydrogenase Deficiency, or G6PD, which is a genetic enzyme disorder that occurs in 30 percent of children who have a kernicterus event, according to Harris.

“Every minute when this happens to a child is very crucial for the ability of the brain to fight off the toxins,” said Harris. “The worst part about this was that his family never heard about this deficiency, was told everything was normal by a pediatrician and was never informed how damaging neonatal(newborn) jaundice can be.”

Because of the damages, the now 5-year-old suffers from cerebral palsy.

“He can’t talk or walk, but he is a brilliant boy cognitively,” said Brody’s grandmother. “He is able to communicate by pointing at a laptop, and he is going to kindergarten next year.”

However, if diagnosed sooner, Harris knows things would’ve ended up different.

“If we ever heard about it, Brody would be a running, healthy boy right now,” she said.

Harris, who was a research specialist for in-vitro fertilization, has made it her life’s mission to bring awareness to this cause. In 2014, she launched a foundation called G6DP Deficiency Foundation.

“It’s a story that I hope I never hear again,” said Harris on her grandson’s journey. “My goal is to educate not only the public but the medical community as well. Most of the time people have it and their health is fine, but it is when they are introduced to triggers that their blood can start hemolyzing.”

Paddle & Pedal for G6DP Deficiency Awareness

On Saturday, Aug. 3, G6PD Deficiency Foundation will be hosting its first-ever fundraiser called “Paddle & Pedal for G6DP Deficiency Awareness” at the Babylon Village Pool.

The event, which runs from 8 a.m. to 2 p.m., calls on people to grab either a paddleboard, kayak, rower or bicycle to go on a scavenger hunt around the village for bracelets that spell out G6DP.

“We wanted to do something different and fun to help attract people,” said Harris.

Afterward, there will be a bbq hosted by Babylon Meat Market with live music by Oogee Wawa at the pool.

If one person learns about the deficiency then the day will be worth it, said the nonprofit’s founder.

“Just by having the knowledge a lot of things can be prevented,” she said.

To learn about the event, click here.