COLONIAL HEIGHTS, Va. -- Sickle cell disease dramatically shortens the lifespan of the nearly 100,000 Americans — mostly African Americans — and 2 million people worldwide.
The inherited, incurable blood disorder that impacts blood flow and, in turn, oxygen from getting to vital organs.
Twenty-nine-year-old Walter Davis of Colonial Heights was diagnosed with sickle cell at birth. He had his first crisis at three years old and learned the meaning of pain at a very young age.
Doctors were not hopeful.
"Life expectancy? My parents were told 25," Davis said. "So that's what I had been told, too.”
But his parents did not want the disease to define him.
“I was just always told that I was different, but I was capable," Davis remembered. "I could still do things, but just in my own way.”
So that’s what he did. He was determined to live a normal life. In between hospital visits he played a variety of sports, including track and basketball.
“I wanted to play football. And of course, it's a contact sport and a violent sport at that," Davis said. "And if you have a blood disorder, having broken blood vessels, bruises isn't going to be conducive for your condition. And then it's the weather, too. It's extreme heat, extreme cold. Just everything about it says, 'No, you can't play.' They thought I was crazy and I see why now.”
In spite of the risks, doctors signed off on him playing in high school.
“So I sleep good at night knowing that I was able to prove to myself and everybody else that I could, I could do it,” Davis said.
But the grind of the gridiron could not prepare him for the hit he was about to receive.
“I had a part between puberty and my early adult years that I was good for a while. I was in the best shape and feeling good. And that's when I thought everything was going to be OK. And the next thing I know, curveball.” Davis continued. “I want to say 23, I start to notice a lag. I'm getting more tired, I'm more fatigued.”
As the doctors originally warned, his disease started causing excruciating agony.
"I would say it's grueling. It is mentally, physically, emotionally exhausting because it doesn't stop," Davis said. "It felt like I was getting beat with a sledgehammer or a metal bat. And I played football, so I know what that good hit feels like.”
The simple act of walking was unbearable for Davis.
“It was really debilitating," he recalled. "When I say I would hurt so bad that I couldn’t get the groceries. Sometimes it felt like I was walking on my bare kneecaps. Each time I stepped, I felt like I could feel the concrete — or whatever was beneath me — sometimes. That's how deep to the bone the ache was. I never want anybody to hurt the way I've been hurt.”
This constant physical pain resulted in more frequent hospital visits.
“I know it's guaranteed over 150 admissions because for the past 10 years," Davis said. "I've been getting admitted at least twice a month and staying a week or two weeks. Get out, go back in. Stay out a week, go back in.”
All while enduring numerous infusions, fluids, drugs and trials resulting in fleeting relief from his suffering. But that physical pain eventually turned into mental anguish.
“With this disease, you get knocked down so many times. And I think my spirit was just tired," Davis said. "And that will to live that fire, it had been extinguished... I didn't want to be here anymore. That's how painful this disease is. It’s debilitating.”
Dr. Wally Smith, the Vice Chair for Sickle Cell Research at VCU Health, met Davis when he was 15.
“Patients with sickle cell disease are told two things: the saddest thing, which is not necessarily true, but many doctors still say, 'Don't plan your life, you're going to die. Don't worry about having to go to college. Don't worry about training for a job. You're going to die.'” Smith said.
The doctor said the second thing patients are told is that they are going to be in pain.
"The pain is not relenting, and it's severe, and it's worse than childbirth," Smith said. "It's worse than a kidney stone. It's worse than anything you could ever think of. It doesn't go away for days, sometimes weeks.”
But the incurable disease, which was first discovered in 1910, that has been wreaking havoc on patients for more than a century, now has a glimmer of hope.
“What's happened now is revolutionary," Smith said. "What would have been called space age 10 years ago is now real.”
VCU Health set out to find candidates for a potential breakthrough clinical trial: gene therapy.
“We were scouring our population for people who were sufficiently motivated, sufficiently needy, and had enough family support that they would be in the trial," Smith said. "Walter fit all three of those. He was needy, he was desperate, they just have family support.”
Davis took a chance specifically on gene addition where his own blood stem cells were collected and then genetically modified to produce blood that doesn’t sickle.
“We all have our part to play," he said. "My part was to play the guinea pig this time.”
Davis was one of 33 people in the U.S. to participate in the gene addition trial.
One of the major risks of this experimental treatment is that patients are treated with high-dose chemotherapy. It is needed to weaken the body’s blood cells, so that when the new modified cells are infused they will win the battle against the old cells that created sickled blood.
Davis was in the hospital for six weeks and documented the process on social media, in hopes of bringing awareness to the potential life-changing treatment.
Below are some of his Davis' video chats with his community.
March 8, 2023:
“I know I've been telling a lot of people about this process that I've been going through, and I've been keeping it a secret… It was something that's really important to me, and it's life-changing, and it's not just going to affect me, it's going to affect a lot of people in the future…. I'm currently undergoing a process to get my sickle cell cured, and what they're doing is they're doing genetic editing. I'm really like Steve Rogers out here.”
March 18, 2023:
“I’m not gonna lie. This is the 18th. It was pretty rough…. They said I'm going to have more days like this. It's just a lot of fatigue. My body It doesn't feel like it's reacting how it should. Discoloration on my face from the chemo.”
“When I agreed to this, I knew it was a big undertaking, but I didn't think I took into account how mentally taxing it would be. I think the physicality of it, I've been in pain my whole life, so that's not new But I think just the mental aspect of it and everything else that comes with it has been a little shocking and, what's the word, overwhelming.
March 25, 2023:
“As you can see, I'm going through it. Today is 3/25/23, March 25, 2023. Today is day 10 of me having my modified cells… I've been going through that and having all the side effects of the chemo now with the mucositis and the loss of my hair and everything.”
March 29, 2023
– By Day 14, Walter could not speak because of the mucositis so his mother recorded a video for him.
“He has really been doing well up until this point. About five days ago, he started to get some effects from the chemo, which caused him to have mucositis and not being able to swallow not being able to talk a lot. He's sores in his mouth.”
The more than one-year process for Davis finally came to a close.
April 14, 2023
“Today is April 14th 2023… and I’m still doing this experimental sickle cell cure. I’ve been in here a month… and a week. exact. But we finally got my platelets to a level that I can go home, which is amazing… Look. we’re packing up and ready to go. We did it man. Making history. We’re going to help so many people. Not just with my disease but so many diseases.”
Then Davis finally got to go home.
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Eight months after Davis completed the trial, the FDA approved two breakthrough gene therapies that can now be used to treat and possibly cure the genetic blood disorder.
While his mind was once consumed with heavy thoughts of pain, now Davis is free to explore so much more. The 29-year-old said he feels like he’s 19 again.
“Life now is a lot more enjoyable. It's a lot more fulfilling,” he said.
Davis has started doing things that he once loved but couldn’t do because of the pain. Working out, going outside in the cold weather and smiling while writing lyrics to his raps.
“Now that I have the time that I can actually reflect and think about my experiences with it, I know it needs to be spoken. It needs to be told, and who better to tell it than me? " he said. "So just trying to take my voice back, take my power back.”
Davis and other trial participants will be monitored for side effects for 15 years before the medical community will call this a cure. But Smith is optimistic.
“So it's mind boggling because I never... I was convinced that that's how I was going to die," Davis said. "Just battling that, just battling day-by-day, just to go to the bathroom, just to go to the grocery store, just to try to make it through. And now I get to fight the way I truly always wanted to fight in a positive way and make a good outcome on this world.”
VCU Health is currently the only qualified treatment center in Virginia. Click here for more information.
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