Queens Woman Fights For Sickle Cell Awareness After It Killed Her Son

QUEENS, NY — Merlene Smith-Sotillo raises awareness of sickle cell disease because she watched it kill her son, the Queens mom told Patch.

“He had four major organ failures,” Smith-Sotillo said. “While he was on his deathbed he said there should be more testing for the disease.”

Sickle cell disease testing has since become a mission for Smith-Sotillo, mother of three and co-founder of Jamaica's Sickle Cell Awareness Foundation — one that only became more difficult during the coronavirus pandemic.

The pandemic brought life as New York knew it to halt, but the New York Blood Center has been working tirelessly during the pandemic to provide free sickle cell testing at select blood drives and is expanding its program this year throughout the city, including in Queens.

Testing might have changed everything for Smith-Sotillo's son Syd, who started having coughing fits in October 2011 and passed away in April 2012, she told Patch.

“My son didn’t have to be in and out of the hospital,” his mom said. “His cells were dying inside and I didn’t know.”

Her son was 30-years-old when he died.

The disorder, which most commonly affects Black people, is named for the sickle shape blood cells that can only survive for 30 days, as compared to the 120-day lifespan of healthy cells, according to the Mayo Clinic.

This cell death overloads the liver and causes jaundice, which yellows the eyes, according to St. Edmund’s Eye Hospital.

Those who inherit the trait from both parents — as Syd did — face chronic fatigue, anemia and an extreme pain called sickle cell crisis, according to the Mayo Clinic.

They also become more sensitive to cold when sickle cells are less able to provide oxygen to the body, according to Smith-Sotillo.

To help raise awareness this month, about the disease, Smith-Sotillo will lead several community events throughout Queens.

Among them is a back-to-school Stop-N-Go event in Queens Village at Queens Baptist Church at 93-23 217 St. this Saturday from 11:30 a.m. to 2 p.m.

People only need to sign up for the back to school items once they are at the church to get the school items, according to Viola Montgomery, the church’s chairwoman for its Missions Ministry and spokeswoman.

“We have approximately 100 bags, and we are hoping to give away all of it,” Montgomery told Patch. “Just sign the list, then grab a bag and go.”

But Smith-Sotillo hopes Queens residents will grab a bag and stay to learn more about the disease she's devoted her life to fighting.

Said Smith-Sotillo, "We plan to step up and tell people about the seriousness of the disease.”