SCOTT AIR FORCE BASE, Ill. --
Wrapped around Tech Sgt. Shonda Blanks’ wrist is a purple bracelet labelled with a name: Iyana. It’s bordered by two hearts and is followed by the words, “Missing you until we meet again.”
“One of (Iyana’s) best friends had it made for her, my kids, and me,” said Blanks, looking down at the band, later adding that purple was one of Iyana’s favorite colors.
It’s just one of the ways Blanks hopes to continue the memory of her daughter, who was only 15 years old when Sickle Cell Disease unexpectedly took Iyana’s life in 2017.
“You know, they say when you die you have flashes of your life, but after something like this happens you kind of look back and go, ‘OK, what could I have done? Was I supposed to do that?’ It’s hard not to because, as a mom, you want to protect your kid. I have had to realize that there is nothing I could have done,” said Blanks.
Blanks, the NCOIC of the 375th Operations Support Squadron commander’s support staff, said SCD, although common, is also one of the least understood diseases in America. With September being Sickle Cell Awareness Month, Blanks hopes to share her story to increase awareness and educate others on any misconceptions.
“The first thing people need to know is it’s associated with African Americans, but as the U.S. is a melting pot, it’s not just African Americans with the disease,” said Blanks.
The Center for Disease Control says about 100,000 Americans have SCD, an inherited red blood cell disorder, which makes it the most common inherited blood disorder in the U.S. An estimated 60-80 percent of those are African American, and one in 13 African American babies are born with the trait, enabling the possibility of passing the sickle cell disease and not just the trait to their future children.
“It is a lifelong condition with symptoms that can vary from person to person and among different age groups,” said Maj. Kristine Andrews, 375th Medical Operations Squadron pediatrician. “Complications can involve long stays in intensive care units.”
People with SCD have abnormal hemoglobin, which is a protein in red blood cells that carries oxygen throughout the body. Growing up, Iyana faced acute chest crises caused by a lack of oxygen in her red blood cells.
Additionally, Iyana experienced multiple hospital stays and blood transfusions throughout her childhood. However, Blanks said Iyana always did very well with the disease, so her death came as a shock.
The National Heart, Lung, and Blood Institute says patients with SCD can suffer from acute pain crisis, chronic pain, severe anemia, infections, acute chest syndrome, brain complications, eye problems, heart disease, pulmonary hypertension, kidney problems, priapism, gall stones, liver complications, leg ulcers, joint complications, and delayed growth and puberty, and many of these symptoms worsen over time.
As technology and medical advancements have improved the lives of sickle-cell patients, life expectancy hovers from 40-60 years.
For those who don’t have the trait but want to help, there are multiple way they can, said Andrews. Donating blood is one of the best options because those with SDC often undergo multiple blood transfusions throughout their lives.
Additionally, it’s important for caretakers and those around SCD patients to practice good hygiene by washing their hands due to a patient’s increased risk of infection.
The psychological aspects are another part of health that shouldn’t be ignored.
“People with SCD may feel sad or depressed,” says the NHLBI.
“When families and friends provide love and support to people with SCD, they can help to relieve stress and sadness.”
The only known cure for the disease is through a bone marrow transplant, and the NHLBI noted that cell transplants are successful in about 85 percent of children when the donor is related and matched.
“She was on the list for a bone marrow transplant,” said Blanks. “She didn’t make it to receive the transplant. She died a month before the bone marrow transplant process, which is extremely hard on me.”
Iyana passed away due to liver failure from a rare side effect to medicine that was intended to combat iron overload. Iron overload is common after multiple blood transfusions. The medicine that was supposed to rid her of excess iron and protect the liver was the very reason she had liver failure, said Blanks.
Throughout it all, Blanks said her resilience was encouraged by the support of many.
“The OSS squadron really came through,“ said Blanks. “My supervisor, first sergeant, commander—the entire (375th Operations Group)—and OSS were tremendous in supporting me. The squadron really put their arms around me, and my church family did as well.”
Iyana, who left behind her mother and two siblings, 18-year-old Tyran and 13-year old Nyla, always strived to be a normal kid, said her mother. She wanted to be a cheerleader, although her condition prevented her from becoming one. Instead, she became a manager of the track team, where she shared what her mother called “the prettiest smile” with the team members. When she got older, she hoped to be a chef and own her own restaurant.
In 2013, Blanks wrote to the Miss Amazing Pageant, which provides opportunities for young women with disabilities to build self-confidence. Iyana was accepted to participate, and Iyana won as a representative for Scott Air Force Base and went on to win first runner up at the national competition later that year.
“I thought that was awesome for her as a person,” said Blanks, “Because she sometimes would ask, ‘Why do I have to have sickle cell?’ I would say, ‘I don’t know; it’s just how you were born, but be the best you can be.’ And she did that.
“She was nice, she was friendly, she was helpful, and she just loved people.”
Furthermore, Blanks said she could describe her daughter in two words: Positive energy.
“She didn’t want to be classified as having Sickle Cell Disease; she wanted to be classified as Iyana,” said Blanks. “I want to carry on her legacy. Tyran came up with our new family motto, ‘We gotta go Hard for Yana.’ He took her death hard. He said, ‘mom, we can’t stay in this house forever; we’ve got to move, but I don’t want to forget about Iyana.’ And so I told him, ‘No, there’s no way—we will never forget her.’”
Tyran also crafted a song titled “Going Hard For Iyana.” In the song Tyran reminisces about his protective bond to his sister, the difficulties of seeing her attached to hospital machines, and the importance of living life to the fullest.
“You never know when it’s your time,” Tyran’s lyrics say. “You could be 15 or you could be 93.”
For those not directly affected by the disease, Blanks wants people to know they can still have a positive impact on those who are.
Whether through support, spreading awareness, good hygiene, donating blood, or becoming a bone marrow donor, everyone can play a part in enhancing the lives of those with SCD. In the meantime, Blanks and her family hope to continue championing her daughter’s legacy—in memory, in awareness, and in song.
“I know (you’re) a guardian angel for me, Nyla, and mamma,” says Tyran’s lyrics, “Thank you for the 15 years—thank you!”