Gina Glass, founder of the Dreamsickle Kids Foundation, is shown with her boyfriend Jamie Adams and their daughters Raven, 18, and Gia, 5, Thursday, Jan. 14, 2021. Gia is afflicted with sickle cell disease, a blood disorder.
Tuesday, Jan. 19, 2021 | 2 a.m.
Gia Adams explains her lifelong medical condition with the maturity of a child who is growing up in hospitals, yet with the simplicity of other 5-year-olds.
Diagnosed through a routine blood screening at birth with sickle cell disease, the Henderson girl knows she has to drink plenty of water because hydration is critical in managing the blood disease.
If she doesn’t, she gets jaundiced, and her eyes, she notes, aren’t white anymore; if she’s jaundiced, a crisis could be near, so she drinks water “so we don’t have to go to the hospital.”
But sometimes, with a condition as serious as sickle cell, she does go to the hospital, and sometimes, she gets a blood transfusion.
“When I get blood, I feel better,” Gia said.
Gia’s ability to articulate her needs without shame and to self-advocate is a natural result of her mother Gina Glass’ work in starting the Dreamsickle Kids Foundation and broader work with the rare disease community. The local foundation is now nearing 3 years old and is ready to open a brick-and-mortar resource center.
“The goal is for sickle cell disease, when it’s mentioned, not to be something that people are like, ‘What is that?’ or ‘How do you get it?' or ‘Is it only Black people who have sickle cell disease?’” said Glass, who left her previous career in insurance to manage a nonprofit online community for families facing the disorder.
Sickle cell disease is a rare genetic disorder that causes red blood cells to form in a sickle shape, resulting in less efficient oxygen transport throughout the body. This can lead to potentially life-threatening systemic consequences, including anemia, severe pain, infections, stroke, heart disease, pulmonary hypertension, kidney failure and liver disease. Although Black Americans are the most affected group in the U.S., the condition cuts across races and is also found in people with Latino, white Mediterranean, Middle Eastern and South Asian heritage.
About 100,000 people nationwide have sickle cell disease, and about 1,000 of them are in Nevada, Glass said. Gia has the most severe form, which comes with anemia.
Gia’s older sister doesn’t have sickle cell, nor is she a carrier. Her cousin, though, does have the disease, and both of her parents are carriers, which can have similar health implications.
Glass moved her family from Southern California to Las Vegas after Gia was born because the financial demands of a major medical condition would be heavier in a region as expensive as Orange County. Las Vegas had a better cost of living, but, Glass found, not as many resources and not as much awareness — even among medical professionals.
Gia faced her first major bout with her disease when she was about a year and a half old, but the closest suburban hospital suggested acetaminophen and antibiotics, which did not stop the double pneumonia from developing in her lungs. Gina took the baby to another hospital in town, which was more familiar with sickle cell disease. Gia pulled through after three days in intensive care.
So in 2018, Dreamsickle Kids Foundation was born.
“Nevada is where I feel like is going to be home for us, and I want my daughter to be in a place where not only do the common people know what sickle cell disease is, but the medical professionals that are going to be charged with taking care of her and pretty much have her life in their hands should be knowledgeable at least with the basics of what sickle cell disease is,” Glass said.
To that end, Glass not only started a foundation, but joined the state’s rare disease advisory council, where she serves as vice chair. In 2019, she worked with now-state Sen. Dina Neal, D-Las Vegas, to pass the Nevada Sickle Cell Bill so that medications and supplements patients need are covered by insurance. The bill also established a registry for patients so that an accurate state prevalence rate can be established.
Glass’ hope is that Dreamsickle Kids gets as influential for area sickle cell families as the Susan G. Komen Foundation is for people impacted by breast cancer.
Dreamsickle raises funds for doctor education and patient support. The foundation adapted its fundraiser walk last year to a mostly virtual event. With the JET Foundation, a local social services organization for underserved families, Glass plans to open a physical site where she can connect other families with medical specialists and social services.
“Nevada has made a lot of progress just in the three years that we’ve been established,” Glass said.
To learn more about Dreamsickle Kids, visit https://dreamsicklekids.org/. For additional support organizations, visit the Sickle Cell Center of Nevada here.
