When Gina Glass, 31 and pregnant with her second child, walked into a routine prenatal appointment, sickle cell disease wasn’t on her mind.
Even when a blood test confirmed both Glass and her partner carried the trait in their genes, meaning there was a 25 percent chance their unborn daughter would live with the disease, she wasn’t too concerned, since the odds were in her favor.
“I didn’t feel like it was a big enough risk,” said Glass, now 35 and the proud mom to 3-year-old Gia Adams, a shy, healthy-looking girl suffering from sickle cell disease.
Glass now realizes the possibility that her daughter would be afflicted by the genetic disease should have been in the front of her mind and wants to ensure that it is for other parents-to-be in the Las Vegas Valley.
“It kind of led me to starting the foundation,” she said, referring to the Dreamsickle Kids Foundation she founded in April.
The nonprofit aimed at increasing awareness of sickle cell disease and helping parents of children living with it connect to resources will host its first public event on Saturday, a walk at Lorenzi Park in Las Vegas in partnership with the Nevada Childhood Cancer Foundation.
Sickle cell disease causes red blood cells to become elongated in a bananalike shape and harden, creating blockages in small vessels that can cause extreme pain, said Dr. Nik Abdul-Rashid, director of the sickle cell disease program at Cure 4 the Kids Foundation and Gia Adams’ hematologist.
One of its main effects are called pain crises, which can only be subdued through painkillers, fluids or blood transfusions in severe cases, Abdul-Rashid said. Other potential complications from the disease include anemia, infections such as pneumonia, vision loss, stroke and other organ damage, according to the Centers for Disease Control and Prevention.
The disease affects about 100,000 Americans, including 1 in every 365 African-American births, according to the CDC, most often affecting those with sub-Saharan African ancestry.
In the last four years, 60 babies were born in Nevada with the disease, Abdul-Rashid said. Testing is mandatory in newborns as part of the newborn screening panel.
Stem cell therapy could cure sickle cell disease, she said, but the treatment is still in the experimental stages.
“I think the most important thing we’re lacking here in the state is awareness and education, even in just the general population, and also within our health care providers,” Abdul-Rashid said. “It’s not a common condition.”
Coming from Orange County, California, Glass said she felt the dearth in resources. While the Nevada Childhood Cancer Foundation provides connections to support services for parents raising a child with sickle cell disease, Glass said she’s had trouble connecting with other parents and finding resources, especially in an emergency.
When Gia came down with pneumonia in 2016, Glass, who lives near Henderson, searched the internet for valley hospitals near higher concentrations of black residents in hopes the doctors there would know how to treat a patient with sickle cell disease. She ended up taking her daughter to University Medical Center near downtown Las Vegas.
As patients get older, Abdul-Rashid said, barriers to accessing care persist. She often hears stories of young black men who show up to the emergency room seeking a dose of an opioid prescription they know will ease the pain only to be sent away without the help they need.
“Instead of accepting that this patient knows his disease and knows what he needs, instead of helping them, they label them as drug seekers,” Abdul-Rashid said. “It’s unfortunate.”
Abdul-Rashid said moms like Glass provide a needed voice for those suffering from sickle cell disease.
“We need people like her,” Abdul-Rashid said. “She’s not just the voice for her daughter, she’s a voice for what she’s gone through as a parent of a child of sickle cell disease.”
Walk for Sickle Cell registration
Saturday’s walk at Lorenzi Park will be the first dedicated to sickle cell in the Las Vegas Valley in about five years, said Nevada Childhood Cancer Foundation President and CEO Jeff Gordon.
“It’s great to have somebody else out there to carry the sickle cell banner,” Gordon said of Glass. “I think a walk is a good way — one of many ways — (to raise awareness) because it brings in so many people.”
Representatives from the National Bone Marrow Registry will be available to help enroll attendees as bone marrow donors, Gordon said.
Proceeds from the event will go toward supporting the foundation and parents of children with sickle cell who are in need, Glass said.
To register in advance, visit dreamsicklekids.eventbrite.com. Registration is $16 for children and $21 for adults, or $17 for children and $25 for adults onsite.
The walk begins at 8:30 a.m. Saturday, Sept. 22 at Lorenzi Park, 3343 W. Washington Ave., in Las Vegas.
3343 W. Washington Ave., Las Vegas, Nevada 89107