Most of us know about cancer, HIV and even ALS, but you might not be familiar with a common disease that is rarely discussed: sickle cell. One 12-year-old girl from the Houston area is striving to change that.
Hailey Fields seems like a typical pre-teen who tries to avoid homework, likes jumping on her trampoline, plays horse with her mom, enjoys a game of air hockey and has an extensive shoe collection and wardrobe, but she is far from ordinary. Armed with pizzazz and a personality that won’t quit, Hailey is a quadruple threat: She’s a working actress, model, runs two businesses and dabbles in hip-hop.
She is outspoken and will let anyone know that she has worked hard for all she’s achieved.
“I’m doing more than a grown up can do, and that should be an achievement, to me,” Hailey said.
Her confidence and her vision, along with her mother’s guidance, is what landed Hailey roles in movies, commercials, on television and motivated her to start her own lip gloss line, Hailey Kisses. But the accomplishment that is closest to Hailey’s heart is her non-profit organization, Covered by the Blood, Inc.
She said the idea of her organization came after she saw older kids starting their own non-profits and she thought, “Maybe I want to start a non-profit, too.” Inspired by her grandmother and a cause that she said means more to her than anything, Covered by the Blood, Inc. was founded.
Through the organization, Hailey and her mother, Grace Henry, hope to bring awareness about the not-so-commonly-talked-about sickle cell disease.
“No one knows what sickle cell is. When I first knew my grandma had it, I didn’t even know what it was,” Hailey said. “I want other kids to know what it is so when they grow up, they can be aware.”
What is sickle cell disease?
Sickle cell disease, also known as sickle cell anemia, is an inherited red blood cell disorder that causes the red blood cells to become hard and sticky and form into a C shape. The disease gets its name from a C-shaped farm tool called a sickle.
According to the Centers for Disease Control and Prevention, sickle cell disease affects about 100,000 Americans, most commonly African Americans, followed by Latinos. Sickle cell occurs in 1 out of every 365 African American births, 1 out of every 16,300 Latino births, and 1 out of 13 African American children is born with the trait, the CDC reported.
Sickle cells die early, causing a constant shortage of red blood cells. Also, when the misshapen cells travel through small blood vessels, they get stuck and clog the blood flow, which results in pain and other problems including infection, acute chest syndrome and stroke, the CDC says.
Symptoms of sickle cell disease
According to the Mayo Clinic, symptoms of sickle cell vary from person to person, but include:
Episodes of pain that can last for hours or weeks in joints, abdomen or in the chest
Painful swelling of the hands and feet
Frequent infections because sickle cells can damage organs that typically fight infection
What does it mean to have the sickle cell trait?
People who inherit one sickle cell gene from one parent and one normal gene from the other parent have the sickle cell trait. Those with the sickle cell trait usually don’t have symptoms of sickle cell disease.
People with the trait can pass it on to their children. If both parents carry the sickle cell trait, there is a 1 in 4 chance that their child will have sickle cell disease and a 50 percent chance their child will carry the trait, according to the CDC.
How do you know if you have sickle cell or its traits?
Sickle cell and sickle traits can be detected through blood tests. Most cases are caught at birth during routine screening.
In Grace and Hailey’s case, Grace has the sickle cell trait, but because Hailey’s father does not have sickle cell and does not carry the trait, Hailey does not either.
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In addition to bringing awareness, Covered by the Blood, Inc. also aims to assist families who are affected by the disease with medical expenses and lost wages. Often times, those with sickle cell disease have to be hospitalized from severe pain, or even undergo frequent blood transfusions, which results in time away from work and school.
“We want to bring assistance to those that are financially impacted by this disease because hospital stays means you can’t go to work,” Grace said.
Grace said she and Hailey also want to use Covered by the Blood, Inc. to encourage those affected by the disease, and bring hope to those who have been given an expiration date on their lives.
“We have a 63-year-old sickle cell warrior with us that wasn’t supposed to live past the age of 10,” Grace said. “We want to bring hope that you can, and will live past the age they (doctors) told you.”
Grace said it’s God’s grace and mercy that has allowed her mother to live so long, and the reason why she and Hailey are alive as well.
“She was told to abort me, I wouldn’t make it, make a decision. ‘It’s either your life, or your unborn child’s life,’” Grace said doctors told Gayle.
Gayle told doctors she couldn’t make that decision because God doesn’t make any mistakes, Grace said.
As Gayle gets older, her sickle cell symptoms get worse, Grace said. Gayle takes medicines every morning to regulate her blood levels, but some days, the medication isn’t enough.
“When her blood level is really low, she gets weak and can’t walk, so we have to make sure she is taken care of,” Grace said.
Food is also sometimes a factor in Gayle’s health. Grace said her mother has to eat, or not eat, certain foods depending on her blood level. Grace said Gayle has to watch and regulate how much potassium she has. Potassium, which helps to balance fluids in the body and protect the heart and brain, is commonly found in bananas, broccoli, yogurt, some fish, nuts and in potatoes, to name a few. As much as Grace tries to help keep her mother’s diet in check, she said it’s not always easy.
“She pretty much is a stubborn one. So, she likes to eat what she wants to eat and just take the effects later and makes her way through the pain,” Grace said.
How you can help
Donating blood can help save the lives of those with sickle cell.
Educating yourself about sickle cell disease and then passing the knowledge to others is one of the best ways to help spread awareness.
Giving your time and money to organizations like Covered by the Blood, Inc. helps to make others aware.