Jazmin and Bryce McDowell (courtesy of Jazmin McDowell)

In July 2016, a resilient, joyful 5-year-old named Bryce took part in a first-of-its-kind clinical trial at Children’s National Health System in Washington, D.C. As an infant, Bryce had been diagnosed with a particularly severe form of sickle cell disease and had already suffered at least four strokes related to the blood disorder.

A little more than a year later, his doctors say Bryce is cured of sickle cell and thriving. He has started school for the first time and is learning how to navigate the world without his mother, who had been at his side since he had his first sickle cell crisis at 6 months old.

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“It hasn’t been the easiest transition for him, but it’s been an amazing transition for us,” says Bryce’s mother, Jazmin McDowell. “He went from being up under Mommy every day and not doing homework and just living his life. Now he has to get up at 6 in the morning to be at school at 7:45, and go to bed at 8:30 every day.”


In the last few decades, there has been significant progress in the treatment of sickle cell disease, a congenital or hereditary blood disorder that affects about 100,000 African Americans. Sickle cell targets red blood cells that carry oxygen to the body. These cells are sickle-shaped, and don’t carry oxygen well; they block the blood vessels and can cause injury to the chest, abdomen, joints and organs, causing serious pain known as a “crisis.”

Dr. Allistair Abraham (Children’s National)

Heretofore, the only way to be cured of sickle cell was to get a bone marrow transplant, which required a “match” with a compatible donor, usually a close relative. What made Bryce’s trial unique is that in his case, his donor was only a partial match.

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“Traditionally, the problem is that there’s a less than 25 percent chance that a patient will have a matched donor,” says Dr. Allistair Abraham, a bone marrow transplant specialist and lead investigator in the clinical trial in which Bryce took part.

In Bryce’s case, however, his body was able to rid itself of the sickle cells with a relative who was only a partial match, his grandfather.

“So, what we’re trying to do is increase donor options for patients,” explains Abraham of the trial that only uses half-matched family members. “What we believe is that by using this approach, we may be able to give all patients a donor option.”

Bryce was a good candidate for the trial because he had a particularly severe form of sickle cell, hemoglobin SS. His mother also has the disease and said that she was understandably crushed when she learned her baby would have the same fate.

“He was 6 weeks old and CDC called me to let me know,” McDowell says. “I was devastated because as a person that went through it, I know what that pain is like, and I couldn’t imagine that for my child.”

But what McDowell didn’t know at the time was how bad it was going to get.


“He was first hospitalized at 6 months with a crisis,” she says, explaining that a crisis in a baby is very rare “because at that age you still have a certain amount of fetal hemoglobin, which is supposed to protect you.”

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But after that first hospitalization, the 27-year-old mother says that she and Bryce became mainstays at Children’s National and its emergency room, mostly because Bryce repeatedly came down with skin infections, a common side effect of sickle cell because the spleen does not function properly with sickle cell disease.

“He was always there to get antibiotic shots,” she recalls.

But the worst day—one she says she will remember for the rest of her life—was Dec. 8, 2013, when Bryce had his first stroke.

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“Bryce was taking a nap. And he woke up with a crick in his arm. And [my fiance and I] were like, ‘Should we go to the doctor, should we leave it alone? Was it a muscle spasm?’” says McDowell. “Because he was a sickle cell patient and prone to a lot of things, we decided to call the ambulance. And we rushed to Children’s. When they called his doctor, she said he could be having a seizure, or he could be having a stroke. My heart immediately stopped,” says McDowell.

Bryce was only 2 years old. Strokes would happen two more times, each time with different symptoms.

Sleeping Bryce (Jazmin McDowell)

“We had one time where his speech was gone. He couldn’t vocalize what was going on and would just cry. There was one time where he was just passed out and was throwing up in his sleep,” says McDowell. “He would defecate on himself and throw up and stare off into space. Every time was a different experience, but it never got easier.”

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McDowell was unable to work and Bryce was unable to go to school because of his condition’s volatile unpredictability. Both of their lives revolved around the hospital, where Bryce received biweekly blood transfusions, during which he would pass out. He had been on the bone marrow donor list since he was 3, but there was no match.

“When he started having the strokes and they couldn’t stop the strokes with transfusions and exchange transfusions, Bryce had what is called EDAS [encephaloduroarteriosynangiosis] surgery,” says McDowell, who was understandably at her wit’s end. The surgery was supposed to correct the flow of his blood vessels and repair them on the left side, but Bryce ended up having a stroke on his right side.

“It was an urgent matter, because we’re at a point where we’re scared for his life,” says McDowell. “It was critical.”


McDowell says that Bryce’s lead doctor, Dr. Jennifer Webb, introduced her to Abraham and the first phase of the trial known as HAPSICKLE, which is funded in part by the hospital’s philanthropic fund and the National Institute of Child Health and Human Development.

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Bryce’s grandfather wound up being a partial-donor match, and by all accounts, the trial was a success. Bryce has had no complications more than a year later and is now down from 14 medications to about six.

“He has no traces of sickle cell,” says McDowell. “The only thing he shows is the sickle cell trait. So we are extremely blessed and thankful.”

Abraham says that Bryce was a particularly good candidate for the trial because he did not have a traditional family donor match, there was no other major organ damage (sickle cell tends to attack and damage organs the longer the disease progresses) and he had already suffered major complications to his brain.

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The procedure itself was relatively short, and especially easy on the donors, for whom providing bone marrow is similar to the process of giving blood.

“It’s really not too much of a process for the donor,” Abraham confirms. “And the transplant part we think of, it’s not a surgery for the patient; it’s like an infusion, takes like 15 minutes.”

Abraham said that patients afterward stay in the hospital for about four to six weeks “just to make sure they’re well and recovering enough to be back in the general population.”

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During the first year after the transplant, patients have to be careful not to be exposed to people who are sick because their immune system needs time to recover. But there are patients that can go back to school, back to work. They also do not have to be on medication for the rest of their lives related to the transplant (as happens with a kidney transplant, for instance).

“Honestly, seeing Bryce go to school for the first time in his life was so rewarding,” says Abraham. “It drives me to want to be able to do the same thing for all children.”

Bryce as Spiderman (Jazmin McDowell)

And though the doctor cautions that a cure for all may be years away (the second phase of the trial is not expected to start until about 2019), the implications for those who have sickle cell disease are enormous.

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“So if this really does well, we’ll be able to study this in larger groups of patients, and hopefully we would have identified a way that we can potentially cure almost every patient with [sickle cell disease].”

As for Bryce, he and his mother are taking their new lives step by step. She is looking for a job, and Bryce is easing into a “normal” childhood.

“I just want him to be a testimony to somebody else and just live his fullest life. Because I feel like his childhood was taken from him because of so much of what he had to go through,” McDowell says.

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“So from here forward, I want him to live his life,” she says. “Do anything that he wants to do. He wants to play soccer, so we’re looking forward to him playing soccer in the next few months. Just to live his best life yet.”


Here are some specific things family members or loved ones can do to support those with sickle cell, according to Dr. Abraham:

  1. Donate blood and encourage people to donate blood. “This is probably one of the easiest things, and blood transfusions are a very important part of caring for people with [sickle cell disease].”
  2. Sign up to be a bone marrow donor. “You can often do this at the point when you’re donating blood. They tend to go together.”
  3. Be more educated and try to educate people about the disease and understand what the treatments are. A hematologist is a good place to start.

To learn more about clinical trials around sickle cell disease, go to ClinicalTrials.gov, Children’s National Health System, the Sickle Cell Disease Coalition or the Sickle Transplant Alliance for Research.