METAIRIE, La. —
The first-grader was going to die if his doctors couldn’t find someone willing to save him, but nearly a year had passed since the search began, and now there was only one person left to ask: his 9-year-old sister.
Reign Howard knew that her brother, Messiah, 7, needed something called a bone marrow transplant, but she didn’t really understand what that meant. Messiah’s doctor tried to explain it to her as she sat in his office, her hair tied up in Afro puffs and her leopard-print sneakers dangling off the chair.
“Will it hurt?” she asked, and he told her that it would, at least for a few days.
She could say no if the surgery was too scary, the doctor at Children’s Hospital in New Orleans told her, but Reign didn’t hesitate. She had watched her brother suffer for years with a debilitating genetic disease and would do anything to help him feel better. So, on that January afternoon, two weeks before the first American would be diagnosed with the novel coronavirus, the Howards and their doctor started discussing a date for the transplant, eventually settling on March 24. That day would be, as their family called it, Messiah’s “rebirth.”
It was only possible because of Reign, who had doted on her little brother all his life. She played with his Marvel figurines when he asked her to, pretending to be Captain America so he could be Black Panther. She helped teach him numbers and letters and the rules to “Guess Who,” which she usually won, unless he got frustrated and she eased up.
They made dozens of silly videos together for their pretend YouTube channel, the “Reign and Messiah Show.” It featured tumbles off their dad’s faux-leather chair and offbeat renditions of “Can’t Stop the Feeling!,” grainy tours of the bathroom and giggly shots of their parents, Toka and Will Howard, snoring. At night, in the darkness, they shared secrets, confiding their school crushes in each other.
Reign never sensed Messiah was jealous of the things she could do that his illness deprived him of, and she never resented all the attention he received because of it. Seldom did he get a gift from a hospital charity without asking if his sister could have one, too.
Her brother didn’t complain much about the extraordinarily rare disease, known as IPEX syndrome, that was ravaging his body, but she saw what it did to him. At age 4, he couldn’t take a step without leg braces and a walker. After he started school, they almost never showed up on time because one of the 14 different medications he took made him throw up in the morning. When he stopped gaining weight, a surgeon implanted a port in his chest that hooked to a nutrition bag. He carried it everywhere in a black and gray backpack.
No one could predict when the disease would take his life, but without a transplant, it inevitably would. IPEX, which affects just 1 in 1.6 million children, causes kids’ immune systems to attack their own organs, leaving them vulnerable to an array of serious health problems. In 2005, Toka’s first child, Elijah, had died at 17 of the same illness, though not until her second son’s birth did she learn that she had passed it down to them.
LEFT: Messiah Howard, left, with his sister, Reign, in an August 2019 family photo. (Family photo) RIGHT: Messiah and Reign in an undated family photo. (Family photo)
By winter, after months on the nutrition bag, Messiah had begun to improve. Reign watched his emaciated legs fill out, his cheeks plump, his toothy grin blossom. In February, the two of them dressed in purple and gold and threw beads off the Children’s Hospital float during the Mardi Gras parade. In March, he got baptized at church, beaming as he broke the water’s surface.
Two days later, he moved into a hospital room decorated with New Orleans Saints gear for what the Howards expected to be a month-long visit. Toka, 51, stayed with Messiah while Reign remained at home with their dad. On a bedside table, Toka placed a picture frame holding each of the kids’ kindergarten portraits. “Me and My Big Sister,” read the inscription.
Messiah then began six days of chemotherapy to make room for his sister’s stem cells, and though the drugs made him miserable, he understood, even at 7, that this is what he had to do to get better.
The Howards had heard about the coronavirus by then, as the schools and stores in their community began to close, but it still felt like a distant worry. The room was specially pressurized to prevent outside air from seeping into it, and everyone who visited Messiah had to wear a mask, including Will, 54, who stopped by a few times a week to sing a song or cover the walls in family photos.
“Everything that’s going on with this virus and things like that, it’s just a blessing that Messiah’s in a good, safe place,” Toka said in a video she recorded on his fourth day in the hospital.
Reign couldn’t see him in person, but they talked through video calls when he felt up to it, and when he didn’t, she wrote him a poem.
“Dear little brother Messiah; you make my every day,” it read in blue print letters. “Dear little brother Messiah; your love will always stay.”
When the morning of the transplant came, Reign got out of bed at 4 and put on the light blue blouse, flowery capris and gold-colored hair bow that she had intended to wear for Picture Day, before her school closed. She donned a “Hello Kitty” mask and brought one of the teddy bears Messiah had given her to take care of until he came home.
Reign woke up from the hour-long surgery and posed with a photo of the sealed bag of bone marrow, her eyes tired but her smile wide. She was sore, but too happy for Messiah to complain about it. Across the hall, in her brother’s room, Will and Toka recorded the moment his sister’s donation arrived.
“This is the day, this is the day, that the Lord has made,” Toka quietly sang, her voice quavering as the doctors hooked the bag to a port in Messiah’s chest.
“The best is yet to come,” she continued, aware that her son, so weak he struggled to talk, didn’t entirely understand what was happening. “He don’t know now. He’s 7, but wait till he gets 17.”
“Here it comes,” Will said, and Messiah stared down at a streak of red trickling up the clear tube.
Reign loved him, Toka reminded her son.
“You have a strong sister.”
‘Blessed and highly favored’
On a summer Saturday in 2017, Reign pointed the camera on her tablet at Messiah as he lifted both hands off a small metal walker and shuffled his feet, each bound with braces, across their carpet floor. His sister gasped.
“Good jooooob,” Reign said, her voice cracking with excitement. “That was Messiah walking without his walker from the bed and back, and he did a thumbs-up great job.”
He gave her a thumbs-up back.
It was early July, two weeks shy of Messiah’s fifth birthday, but Reign, then 6, had already embraced her role as a caretaker, helping her mom feed Messiah on the days he was too weak to do it himself. Once, when Toka spent the night at a hospital after her blood pressure spiked, Will was left to watch over Messiah without her. He had never changed out his son’s nutrition bag, so Reign, who’d watched her mom do the procedure dozens of times, did it herself.
By then, Reign was sleeping on an air mattress in the family’s living room because they only owned two beds, and Toka needed to keep an eye on Messiah through the night. It was a sacrifice, but one that Reign didn’t mind; her parents had made them all her life.
Toka’s rheumatoid arthritis had left her on disability, receiving $511 a month, while Will had almost always worked three jobs, starting his day at 4 a.m. in a Whole Foods produce department before late shifts driving for Uber or serving as a cashier at another grocery store.
The Howards never made enough money to save much of it, but they were renowned for their generosity. Toka collected Burger King coupons and passed them out in envelopes to the receptionists at school. She gave their principal, Michelle Nichols, a sweater and a purse, and when one staff member’s husband got laid off, Toka gave the woman a bag of clothes for the couple’s kids.
After a friend lost a job because of the pandemic, Toka and Will gave her $200, unprompted.
“Seriously?” she asked. “Don’t you need it more?”
They might have, but the Howards, deep believers in God, considered their family fortunate, an especially remarkable outlook for Toka, who had lost a son to illness and two siblings to gunfire in the New Orleans projects. But then she met Will, a kind and loyal man, and along came Reign when Toka was 41 and Messiah when she was 43. She called her daughter “Hershey Kiss” and her son “Teddy Bear” and snuggled with them every night before bed.
Both kids were sweet and exceedingly polite and so smart that they made high honors at Victory Christian Academy, a private school their parents never could have afforded without state scholarships.
“Blessed and highly favored,” Toka would say, radiating an optimism that rubbed off on her kids.
Messiah cherished school, even when he didn’t feel well enough to be there. Instead of leaving when he needed a rest, he’d wave to his first-grade teacher and she would tell all the students to put their heads down, sparing him from embarrassment. At home, Reign helped her brother keep up, reciting Bible verses with him so often that he became the only student in his class to memorize every scripture assigned, word for word.
Both had high aspirations for their futures, when they were grown-ups: Reign a doctor who helped kids like her brother, and Messiah a football coach who made enough money to buy a home for their mom.
All that stood in the way, the Howards thought, was a transplant. Messiah’s doctor, pediatric hematologist and oncologist Zachary LeBlanc, didn’t choose Reign from the start because she was only a 50 percent match, which meant Messiah’s body might not accept her bone marrow.
Finding a perfect match was hard, because the model donor also needed to be young, never previously pregnant and of the same race, but that’s just who LeBlanc discovered in the online registry early last year. The woman, who was in her 20s, agreed to the transplant, and LeBlanc scheduled the procedure for July, thrilling Messiah’s family. Afterward, they imagined, he would be just like any other boy his age. Messiah could draw pictures without his hand trembling. He could play football at recess.
Then, about two weeks before the surgery, the woman backed out. LeBlanc never learned why.
Late last October, Messiah ended up in the hospital again, his immune system struggling to fight off another infection. On Halloween, Reign and Will went trick-or-treating for him, but before they stopped by the hospital, his sister had an idea. She wanted to pull a prank.
After they got to his room at Children’s, Will broke the news. They couldn’t find any candy. As his eyes began to well, they dumped the bag out on his bed. He laughed, and just like every other year, Messiah and Reign traded favorites: Twix for her, Butterfingers for him.
LeBlanc kept searching for other donors but found no more ideal matches, and the candidates he did track down either declined or didn’t respond. By year’s end, the physician concluded that Reign was their best hope.
When he asked if she would donate her bone marrow, the fourth-grader wondered if that meant the doctors would have to take actual bones out of her body. It didn’t matter, Reign decided. She would still do it.
LEFT: Messiah holds the bag used to transplant his sister's bone marrow into him in March. (Family photo) RIGHT: Reign holds the full bag used to transplant her bone marrow into her brother in March. (Family photo)
The plastic bag was empty, the transplant a success, and now Messiah was holding a walkie-talkie the hospital had given him so he could chat with Reign, who was recovering in a room across the hall.
“Thank you for saving my life,” Messiah told his sister.
Before she left the next day, Reign wheeled her IV pole over to his window and waved goodbye.
Messiah improved, feeling well enough by the end of the week to get out of bed and suck on a strawberry Ring Pop. A week after that, he decided to take on some homework, tracing S’s and T’s for his penmanship class. At Easter, on April 12, he wore shredded yellow paper on his head like a wig and grinned for a photo.
Then, a couple days later, Toka overheard him wheezing. His mom thought he was joking before she realized he was asleep and struggling to breathe. He had a fever, too, though that wasn’t unexpected given what his body had weathered. Still, covid-19 had hit New Orleans hard. As a precaution, his doctors decided to test him.
In the coming months, pediatricians across the country would learn that infected children rarely developed serious symptoms, but the ones who proved most susceptible to the virus were, like Messiah, kids of color with preexisting conditions.
At home, Reign had mostly recovered from her surgery. The soreness had subsided and she was enthralled by the two bumps on her lower back, where the needles had gone in. She’d gotten used to virtual school by then, but she was bored without her brother. Her dad played with her, just not in the same way Messiah did. Will had updated Reign on the latest, explaining that her brother wasn’t feeling well again and what it could be. She prayed for him even more. She wanted him to come home soon.
The girl was in her dad’s bedroom, just finishing up virtual school on the afternoon of April 16, when Will’s phone rang.
“He tested positive,” Reign heard her mother say, and then she watched her father begin to weep.
‘Don’t come back in here’
She didn’t understand.
“How did Messiah get the covid?” Reign asked her dad, but he didn’t know what to say. Will feared that he had brought it into his son’s room during a visit, until he, Reign and Toka all tested negative. None of the staff treating him turned up positive either, Children’s told the family. The hospital could offer no explanation.
Messiah was moved to another room, this one designed to prevent air from seeping out. Toka moved with him, aware that her son now posed a danger to her health, too, but she felt sure God would protect her and that Messiah would recover.
In video calls, his sister encouraged him.
“It’s going to be all right,” Reign said, but Messiah didn’t feel all right, and after a few days, the boy told his mom he didn’t want to do any more calls.
Soon, he was taken to intensive care.
In mid-April, doctors were still learning how best to treat infected patients, but LeBlanc and his colleagues tried everything they could think of: an oxygen tube, then an oxygen mask; plasma from people who had recovered from the virus; remdesivir, the promising antiviral.
None of it made a difference. Messiah’s lungs were failing. He needed more help.
He didn’t want to be put to sleep, though, and just before the doctors intubated him, he tried to stall.
“Wait, wait, wait. Let me tell you something,” he pleaded with his mom. Toka poured water into his Saints cup and gave him a sip. She told him she loved him, then watched his eyes fade shut.
His doctors’ attention returned to Reign. LeBlanc, who would wake up at all hours of the night to think through Messiah’s treatment, believed that the virus had destroyed his new bone marrow, leaving the boy without a functioning immune system. The doctor hoped a fresh round of Reign’s stem cells might help.
Reign nervously returned to Children’s on May 4 to have a port inserted into her neck, just like the one she’d seen her brother live with for months. After surgery, she was shuttled to the dialysis room and hooked up to a machine. While it extracted the cells that Messiah’s doctors intended to give him the next morning, Reign threw up into a bucket.
At 3 a.m., two members of the hospital staff stopped by her room while she slept. Will got up to speak with them.
Messiah’s condition, they said, had deteriorated. It was too late to help him.
He would be dead in less than 24 hours.
The despair that rushed over Will quickly turned to anger. All that his daughter endured, he realized, had been for nothing.
“Don’t come back in here,” Will told them. “She’s done.”
He joined Toka in his son’s room later that morning, and they decided Reign needed a chance to say goodbye. Will went back down to get her.
“When are we going home, Dada?” she asked, expecting that this time, her brother would join them.
“Messiah is not coming home with us,” he said, and wrapped his arms around her.
The reality of what that meant didn’t sink in until Reign put on scrubs, booties and a mask and walked into the intensive care unit, where she saw her brother in person for the first time in seven weeks.
“It’s just going to be the three of us now,” Toka said.
“The three of us?” Reign asked, incredulous.
Crying, she held Messiah’s hand and kissed his forehead. Reign didn’t know what to tell him. She had given her brother what the adults said he needed to get better, to grow up and grow old with her, but none of it had mattered.
Reign had to leave, her parents told her then. She needed to get the port in her neck removed.
Back in her room, the doctors numbed her skin, but didn’t put her under, as she had expected. Reign, her cheeks still wet from saying goodbye to Messiah, panicked, thrashing in the bed as she tried to pull away. The nurses gripped her arms, and Will held her legs down. He told her it would be okay, but nothing was okay. She squeezed her eyes closed and screamed.
‘The sister that loved you’
Reign sat alone at the desk in her dad’s room, the same place she had been when she learned her brother had the virus. She took out a pair of index cards and a pencil and searched for the words she couldn’t find that day in the hospital.
“Dear Messiah,” she wrote in small, tidy letters. “You were such a inspiration in my life, Mama and Dada’s life, your friends’ life, your teachers’ life and much more!! Now I feel like an only child but I am not. I’m sorry you had to suffer when you were dying in I.C.U. I am sorry within the times of Covid 19, we did the bone marrow transplant it was successful, but then you caught it.”
At the end, she drew a kiss face, a crying face, a heart, a star and a cross, and described herself as “the sister that loved you more than Anything in this world.”
She saw his body a few days later in a brown casket that she thought was too big for such a small boy. He wore a black Saints shirt, but when Reign touched his chest, it felt so hard. He didn’t look like her brother either. His face was pale, his skin wrinkled.
Reign almost cried at his funeral, the first one she had ever attended, but forced herself not to.
“You’re so strong,” people told her, praise repeated many times in the months that followed.
So she kept smiling and holding back her tears, though when she was alone she wondered whether Messiah, up in heaven, remembered who she was.
She didn’t share her feelings, not even when her mother prayed with her before bedtime. They recited Psalm 91 together, then Toka would kiss Reign on the cheek and tell her: “Hershey Kiss, Mama loves you.”
Reign didn’t want to make things harder for her parents, who had reacted to losing Messiah in starkly different ways.
Toka believed her son’s death was all part of God’s plan and that there was little use in asking why. She didn’t blame Children’s and was especially thankful to LeBlanc, who still struggles not to break down when he thinks about Messiah.
Reign knew her dad didn’t feel the same way. He couldn’t quell the waves of resentment or get answers to his lingering questions.
How did Messiah get covid, and could the hospital have done anything more to protect him from it?
Should his doctors have delayed the transplant, given the outbreak?
“I ask myself that a lot,” LeBlanc said, recalling how little the country understood about the pandemic on March 17, when Messiah’s chemotherapy began.
He would become one of just 133 children killed by the virus nationwide between March and mid-November.
For Reign, his death was haunting.
“I couldn’t save him,” she said to her dad once, but every time he asked if she was all right, Reign nodded and smiled and told him she was fine.
Reign had always appreciated how much Messiah relied on her. Now his absence made her understand how much she needed him, too.
“Let me draw you a picture,” he would say when she was upset, and he’d come back with a smiley face. She spent hours playing with those annoying Marvel figurines, but he devoted just as many to playing Ken when she pulled out her Barbies.
Once, during an argument between their parents, Messiah took his sister’s hand.
“Come on, Reign,” he said, leading her into the bathroom and shutting the door behind them.
Then there were all those videos, for the “Reign and Messiah Show.” He’d mostly acted as the cameraman, without complaint, while she directed their living room adventures.
Now Reign quit making silly videos and gave most of her dolls away. Instead of reciting Bible verses, she spent hours on her Galaxy tablet skimming TikTok. She stopped talking as much about wanting to become a doctor who helped kids.
After Victory’s campus reopened in August, her grades slipped. In Bible class, taught by the principal, Reign seldom raised her hand or answered questions. Often, she laid her head down on the desk.
“She’s not herself,” Nichols decided, fearing that Reign, long a straight-A student, could spiral when she got her first report card. Nichols worried even more that she might not care at all, a sign that Reign could be depressed.
The principal encouraged Toka to get her counseling.
Toka did, but the therapist told her that Reign seemed fine and wouldn’t need to come back for several months.
Her daughter, the woman said, was so strong.
Frustrated, Nichols suggested that Toka consider joining a grief group at their church. It wasn’t meant for kids, but maybe it could help Reign, too.
At the first meeting, Reign sat up straight with both hands folded in her lap and, in a room with eight adults, silently watched people in a video describe their pain for 40 minutes. Afterward, she opened a workbook to a page titled, “Common Responses to the Death of a Loved One.” Reign took a pen and — for her mom, not herself, she explained later — filled in the bubble next to “Anxiety.”
A young woman sitting next to Reign talked about her dad’s death before an older man who had lost his wife of 66 years asked Toka why she had come.
She explained, and everyone in the room looked over at Reign.
“I just feel like we all have our own appointed time,” Toka said. “I thank God that I don’t be like, ‘What if this and that?’ Because you’d drive yourself crazy. So sometimes you just gotta let it go and you gotta keep it moving and put it in a place where it don’t hurt.”
Reign didn’t say a word, not then or any other time in the hour of discussion that followed.
Two days later, Toka met with Reign’s homeroom teacher and picked up her first-quarter report card. Reign was sitting on the apartment stairs, tumbling a rainbow-colored slinky to the bottom, when her mom brought up her grades.
“Reign, you had a beautiful report card. You got an A in behavior. Your teacher spoke very highly of you,” Toka said, determined to stay positive. “History, science and Bible — you got like a C. But everything else is good.”
Reign scrunched her nose and cocked her head to one side. She sat still for a moment before retrieving the slinky from the bottom of the steps. Back upstairs, in her room, she picked up her tablet and lay on the bed.
Toka walked in, the grief workbook in hand.
“You want to read the first question?” Toka asked.
“What first question?”
“The little question, here,” Toka said, opening the page listing the typical responses to a loved one’s death.
Reign ignored her, and Toka dropped it. A few minutes later, she returned with the grades, reassuring her daughter again that she had done a great job. Toka placed the report card on the bed beside her.
Reign, still staring at the screen, ignored that, too.
‘Maybe I just got over it’
They had waited four days for the darkness to pass.
It was late October, and Hurricane Zeta had just ripped through southeast Louisiana, leaving the Howards without power and making a hard week even harder.
“First holidays without Messiah. Lord,” Toka said as she sat in a chair next to the front door, cracked open to keep the living room cool. “I was thinking this morning: Six months.”
That’s how long it had been since his death, but the family had come no closer to escaping it. And they had tried. Toka had given away his clothes and nearly all of his toys, and they had moved into a new apartment, hoping it wouldn’t perpetually remind them of who was missing.
But now Halloween had arrived, and all they could think of was Messiah.
Across the room, Will sat on a section of carpet within reach of the afternoon sunlight, and Reign, armed with a tray of face paint, knelt next to him. For the first time in his life, her dad had agreed to dress up for Halloween. Reign decided they should go as the Dr. Seuss characters “Thing 1” and “Thing 2” because Messiah had worn the same outfit for a school event in kindergarten.
Reign’s parents just wanted her to have fun that evening, to wear a silly costume and gorge on sugar, but without Messiah, nothing felt the same. Will had broken down at work the day before, unable to fend off the memories that the crisp fall air evoked. Stacked in the corner of the living room were Messiah’s old Thanksgiving school crafts — the colored-in cornucopia, the turkey made from cutouts of their handprints — that Toka was preparing for a place on the fridge.
“This was Messiah’s holiday. He loved dressing up and all that,” she said of Halloween. “What he would have been, Thing 3?”
“No, he would have been Thing 2. I would have been Thing 1. Dada would have been Dr. Seuss,” Reign said. “Because I was born before Messiah, so I would have been Thing 1.”
For months after his funeral, Reign wouldn’t talk about her brother at all. It made her feel sad, and even though Will thought she should let herself feel that way sometimes, like he did, Reign resisted.
“Maybe I just got over it,” she explained once. “But I don’t really know.”
Reign finished her dad’s makeup and he did hers, then both of them dressed in their red shirts and matching pants. As Will slipped the blue wig on his daughter’s head, the power switched back on.
“Thank you, Jesus,” Toka said.
With dusk approaching, they stopped by a festival at their church before heading out in search of candy in a nearby neighborhood, where, it appeared, no one was offering any.
“We striking out, y’all,” Will said.
“Don’t say that,” Reign told him, nervous that the pandemic would ruin yet another day.
Will kept driving and, at last, they came upon a block decorated with ghosts and skeletons. Reign’s bag began to fill, and when she had stuffed it an hour later, her dad announced it was time go home.
“Messiah, you was missed, dear,” Toka said when they returned to the car.
On the ride back, Reign was quiet. They parked, and she lugged in her spoil of Twixes and M&Ms and the Butterfingers that she no longer had someone to trade with. Her mom went upstairs, and Will headed to the kitchen. Reign sat in the middle of the living room floor, alone. She dumped the bag out and stared at it. Her dad came back over.
“Wow. Look at that,” he said. “You did good for a couple houses.”
“Mmhmm,” she responded, her head still down.
“You all right?” he asked, sensing that the weight of the day, and all it represented, had finally become too much for his daughter.
Reign looked up, then nodded and smiled and told him she was fine.
Magda Jean-Louis contributed to this report.