For Those Battling Sickle Cell Disease, the Strongest Prescription is Hope

Spending months in a hospital bed, Ninah A. Walters has learned to measure time differently.  Some days are marked by the smallest victories, such as whether or not she’s able to keep down small bites of food.

The 16-year-old has been hospitalized for nearly three months due to severe complications of sickle cell disease, including constant seizures even while she sleeps, strokes, and neurological damage that has left her partially paralyzed. Due to the severity of her condition, she has been medically withdrawn from attending school on campus since Fall 2025.

Her mother, Dr. Rayna Walters, a therapist, stays at the hospital around the clock and is never far from Ninah’s side.

“When people ask me what sickle cell disease is, I tell them, ‘It’s a medical condition in which abnormal red blood cells obstruct blood flow, affecting organs and other parts of the body that require oxygen-rich blood,’” Walters, 47, said.

Emotionally, she has a very different definition.

“It is a betrayal of the body,” the mother continued.  “The level of unrest that goes through you when you are told that your child has an incurable illness never goes away, not even for a moment.”

Living a life where every day brings medical complications of increasingly higher stakes is mentally and physically taxing, the mother-daughter duo explained.

“I currently have torn rotator cuffs, injured fingers, and aching knees from lifting, turning, and caring for Ninah,” Walters said.  “Fighting a life-threatening illness of such unpredictability comes at a tremendous cost to both of us.”

Despite such medically dire circumstances, the two are rich in one regard: hope. 

“We fight to layer precious moments into everything we do, and we laugh constantly,” said Ninah.  “Mom gives me facials in the hospital, she does my hair, and brings my own clothes, sheets, and comforters, so that color and my favorite things are always surrounding me.”

The teen says that these moments of normalcy, laughter, and her mother’s presence have helped her keep fighting many times when she wanted to give up.

“I don’t always carry this well,” said Ninah. “In the past three months, I have had invasive surgery on my liver, lungs, and upper chest.”

She paused before describing what has sustained her.

“My mother and I love each other relentlessly.  There is no me without her,” she said.  “Her hope and the love she has for me make me believe in a future that sometimes it’s very hard for me to believe I’ll ever see.”

Hope is Stronger Than Adversity

Sickle cell disease presents differently from person to person, even among those with the same genotype.

Inova Fairfax Hospital describes sickle cell disease as an inherited blood disorder in which red blood cells become crescent, or sickle-shaped, instead of their usual round shape. Due to the genetic abnormality, these sickle-shaped cells often get stuck in blood vessels, blocking blood flow, causing pain, infections, anemia, and life-threatening health complications.

A native of Sierra Leone, Mary Toure was 9 years old when she first experienced severe pain in her left knee and began limping. Her parents were unaware that they carried the sickle cell trait and initially rebutted the diagnosis.

“My parents’ denial shows how important education is about sickle cell disease even for families whose genealogy has no history of it,” said Toure, 48.

It would be another missing piece of critically needed education surrounding sickle cell disease that almost ended her life four years ago.

In 2022, after visiting Sierra Leone, Toure developed malaria. She experienced cardiac arrest, underwent dialysis, multiple blood transfusions, and spent nearly two months in intensive care.

“There are approximately two weeks of my life that I have no memory of; I almost died fighting malaria,” Toure recalled.  “Believe it or not, we as sickle cell patients were medically taught that we are immune to malaria.  Most of us believe it to this day.”

Her hard fought recovery changed her outlook on life and led her back to something she had wanted to pursue for years: cooking.

“Becoming a chef was not encouraged when I was growing up in an African household; it was not looked highly upon as a profession,” Toure said.

However, she credits her recovery with saving both her life and her spirit.

“For me, cooking is therapeutic,” she said. “The prepping of it, the smells, the colors, feeding people, watching them enjoy.  It makes me happy.”

Now working as a caterer and making plans to open a food truck, the entrepreneur sees hope and peace as the lifeline to her recovery and newfound joy. 

“Where there is hope, a measure of peace can be found,” Toure said. “Find your peace place.”

When Hope Becomes the Cure

Francita Tador, wife and mother, found her family’s path toward hope through a different route, desperation to save her son’s life.

Tador, 46, has sickle cell disease. During her pregnancy, she learned that her son, Caden Major, 20, would also have the disease.

“Because my own experience with sickle cell had been relatively stable, I initially expected that Caden’s experience might be similar,” she said.  “It wasn’t, and I could never have imagined the pain and suffering my son would actually have to endure.”

By 6 months old, Major was experiencing swollen and painful feet. As he grew older, the pain became debilitating.

“Eventually, it got so bad until his pain never went away,” Tador recounted. “He missed about one-third of elementary school, half of middle school, and by high school he was forced to stop attending completely.”

Tador said she relied heavily on hope during that period.

“My son, where I used to see light, his eyes had started to dim,” Tador continued. “As a mother, it was terrifying.”

The mother described the long period of depression and isolation her son suffered and her desperation to save both his physical and mental health as devastating.

“I had hope only through faith because there was nothing else there to grasp onto,” she said. “I didn’t see much hope in medicine; I didn’t see much hope in the doctors, but I always had faith in the supernatural.”

That faith and hope would be well served.

At the peak of the family’s desperation, Major’s pediatric hematologist introduced the family to a newly approved gene therapy by Genetix Biotherapeutics.

“Very simply, gene therapy is the removal of the sickled red blood cells from the bone marrow; those cells are altered in a lab and later placed back in the body.  For most with sickle cell, the replaced cells now function like normal cells,” Tador explained.

At 19 years old, after undergoing chemotherapy to prepare his body for the treatment, Major became the first pediatric patient in Florida to receive the newly FDA approved gene therapy.

Although there is still no universal cure for sickle cell disease, today, Tador describes her son as confident, outgoing, and socially engaged. 

“He is the person I feel like he was meant to be but couldn’t be with sickle cell disease,” she said.

For Ninah, while still in a very serious battle for her health, she too remains anchored by love and hope.

“When the weather is nice, mom does my skincare, lifts me into my wheelchair, attaches my oxygen, and rolls me outside into the hospital courtyard,” said the 16-year-old.  “We read, talk, giggle, and pass the time like best friends.”

Hope to Toure has meant following her own dreams instead of living up to others’ expectations. 

“I am now part of a large sickle cell community at Inova Fairfax Hospital; I speak to others with sickle cell and talk about how to hope even during the darkest times,” she said.

After years of battling an illness relentless in its attack, the strongest medicine, the mothers agree, is simple.

“Hope is one of the most powerful forces in the universe,” Walters explained. “It is the one thing, along with the unconditional love that we have for our children, that there is no illness, condition, or set of circumstances powerful enough to break.”

This reporter has genotype SS, the most aggressive form of sickle cell disease. She lectures and advocates nationally for the inclusion of mental health support and holistic and alternative medicine as treatment for those with chronic illnesses.