by David Kroman ((This article originally appeared in Cross Cut)

Demont Corneleus is a large, African-American man with a bald head. He’s tough — a former Marine, and the kind of man who regrets that he was never deployed to Iraq or Afghanistan.

But when Corneleus speaks of his 9-year-old daughter Seleea’s first months of life, there’s a crack in his voice.

When Seleea was born, something was wrong. Just weeks old, she lived on IVs. An ever-rotating cast of doctors treated her for issues no one, not even the doctors, seemed to fully understand. “It was a life shock,” Corneleus says, “because we didn’t know nothing.”

Seleea, it turned out, had sickle cell disease, a genetic malady that hides mostly in the bloodlines of dark skinned people like the Corneleuses. Demont may not have known it at the time, but the diagnosis almost guaranteed he’d watch his daughter battle unbearable pain and an immune system as fragile as glass.

“Me being the dad, I gotta keep it together,” he recalls. “My wife was scared, but I got to be the strong one. I was emotional, but I couldn’t show it. We just had to do what we had to do.”

The Corneleuses live in Renton, but treatment for sickle cell was lacking in the area. At nearby Valley Medical Center in Renton, staff members scratched their heads and told the Corneleuses they needed to head elsewhere.

The search for quality care ultimately took the Corneleuses back to Seattle’s Central District, where Demont grew up — to the doctor’s office he attended as a boy, the Odessa Brown Children’s Clinic, long a central institution in this once predominantly African-American neighborhood.

But while the care they have found at Odessa Brown has been a godsend, the community that the clinic was created to serve has been scattered like marbles, as more families like the Corneleuses have been priced out. Many Odessa Brown patients spend hours driving and busing to and from doctors appointments just to get the specialized treatment that they need.

The Corneleuses’ story, and that of the clinic and the Central District more broadly, are small weather vanes within a rapidly changing city. Call it what you will – a demographic shift, gentrification, displacement – the whitening of the Central District is making it harder for many families to access the care they trust and that simply does not exist anywhere else.

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Odessa Brown is tucked into a hillside halfway between downtown and Lake Washington. It is near the end of a corridor of parks and community centers named for local and national African American heroes along Yesler street – the Langston Hughes Performing Arts Center, Edwin T. Pratt and Dr. Blanche Lavizzo parks, and the Frederick Douglass and Sojourner Truth library.

Inside the clinic, wooden beams span the A-frame ceiling. Its hospital interior hides behind a coat of fresh paint and psychedelic paintings. But behind that first layer, the floors shake and the waiting room is overcrowded. “It’s lipstick on a pig,” says Dr. Ben Danielson, the clinic’s Medical Director, as he scans the layout.

Odessa Brown was built in the late 1960s at the height of race struggles in the United States. In Seattle, the Black Panthers were putting in hours setting up lunch lines for African-American youth and Odessa Brown’s namesake was fighting for federal funding to build a pediatric clinic.

Ms. Brown was a Seattle transplant from Arkansas. She spent much of her life ill, but as she traveled the country, her skin color kept her from the care she needed. She knew she was not alone, so fought for money from the short-lived Model Cities program to create a black-focused, pediatric community clinic to be located in the heart of Seattle’s African-America community.

Unbeknownst to those around her, Ms. Brown was battling leukemia the whole time. She never saw the clinic open.

Today, Dr. Danielson is the clinic’s patriarch. He is a tall man with large hands, dried out from being washed and sterilized so many times a day. He grew up in foster care; his adopted mother is the artist behind the clinic’s odd paintings. Around the clinic, patients and staff call him simply Ben. He carries himself with both the weight of a school principal and the levity of a summer camp counselor.

Dr. Danielson speaks of his clinic with a mixture of pride and concern. Pride because Odessa Brown fills a void for Seattle’s poor and minority communities. Concern because Ms. Brown’s promise – that her clinic would be accessible for any family, regardless of class and race – is slipping away every year. Because while the Odessa Brown clinic remains a lifeline for the region’s black population, the center of that community no longer holds. The neighborhood, once 60 percent African American, is down to around 20 percent, according to the most recent census. Seattle is simply too expensive.

More and more of the clinic’s patients, including the Corneleuses, are forced to drive in from the city’s more affordable edges. It’s a community clinic without a community and its staff struggles to provide its brand of holistic and preventative care. “We’re breaking our promise,” says Dr. Danielson.

Well before Amazon and Microsoft, restrictive covenants and racist lending practices relegated many of Seattle’s minorities to the Central District. It was, in its most literal definition, a ghetto.

And yet the old guard of the neighborhood look back with nostalgia. Margaret Barrie remembers, first and foremost, the diversity. “When I went to my first day of kindergarten, everybody looked different,” says Barrie, now in her 70s. “But when we opened our mouths we sounded the same.”

Margaret has thick grey hair that wings out in both directions. She’s a great-grandmother. But while her skin may be weathered, she doesn’t look the part.

She grew up in the heart of the Central District. She lived for a time in West Seattle and then Mt. Baker before returning to the CD, to a house on 19th and Mercer. There, she raised both her daughter and granddaughter Telah.

Samiyah doesn’t remember the neighborhood, but Margaret and Telah tell stories of parades down Empire Street, now Martin Luther King Way. They tell stories of that artist who lived off Yesler, the one who made the plates, but whose name they can’t quite remember. They tell stories of trick-or-treating on Halloween, Telah’s work crew called the Clean Up Kids, and community picnics in Pratt Park. One summer, says Margaret, a community organization set up a walking exhibit of important moments in black history: abolitionists at the library; Harriet Tubman at the fire station; Rosa Parks at the Odessa Brown clinic.

They also tell stories of using Odessa Brown – all four generations of the family – as patients, employees and community members. When Margaret had her daughter, she took her to Odessa Brown. When her granddaughter Telah was born, she too went to Odessa Brown. When Telah, who had since been priced out of Seattle and moved to Kent, got pregnant, she still used Odessa Brown’s Women, Infants, and Children program.

And when Samiyah was born and her sickle cell diagnosis went untreated while other hospitals waited for insurance to clear, Telah drove 20 miles from her home in Kent to Odessa Brown, where questions of insurance were ignored in favor of the early treatment Samiyah needed.

“It’s not like we’re members,” Margaret says. “They treat people like they’re people, with respect.”

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African Americans in the United States are statistically less healthy than white people. While much of that is the result of deep social inequities, sickle cell is not; believed to have evolved as a response to malaria, it’s a simple matter of genetics. If you carry a certain recessive gene, you have some amount of protection from the infectious disease. But if both parents pass the trait on, their child will have sickle cell disease. In the U.S., it affects 1 in every 500 African Americans, 1 in every 36,000 Latinos, and almost no white people.

The disease is complicated and variable. But, in short, its name defines the affliction. While normal red blood cells are flexible, cells in a sickle cell patient are rigid. When strained from dehydration, cold, or even psychological stress, the cells morph from their donut shape into small sickles. The little anchors get hung up where they’re not supposed to – in blood vessels, organs and sometimes the brain.

The head of Odessa Brown’s sickle cell program is Dr. Michael Bender, known by his colleagues and patients as just Bender. Mention sickle cell in a 100-mile radius of Seattle and his name will likely come up. He says the major effect of sickled cells is pain. How much and how often depends on the patient. But in its most extreme instances, Dr. Bender says the pain can be “absolutely excruciating.” Another doctor – not an employee with Odessa Brown – said that she never felt the same after she heard the screams of a kid in the throes of a sickle cell crisis.

The pain, though, is really just the beginning. As the mutated cells pass through the system, they cause damage to just about everything they touch, scraping through the spleen, gall bladders, kidneys and immune system. In the worst case, the sickle cells cause blockages in the brain, which can end in a stroke.

As a result, children as young as 10 often have their gallbladders removed. Kidney damage can debilitate nighttime bladder control, leading to bed wetting into teenage years and beyond. Most devastating is the body’s weakened ability to fight infections. A normal temperature can quickly progress into something much more dangerous, even deadly.

In some cases, the pain is so extreme that doctors prescribe codeine and morphine. Those medications, of course, are extremely addicting, but perhaps the lesser of two evils.

But what happens, Dr. Bender points out, when a young black man goes to a prescription counter seeking any pain medications, let alone codeine? “They’re not treated with much respect,” he says.

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Back in Renton, in the common room of the Corneleuses’ apartment building, 9-year-old Seleea sits perched on a stool twice her size. She sips from a water bottle every couple minutes to stay hydrated, the only thing that could possibly suggest her sickle cell diagnosis. Her manners are impeccable.

Seleea’s sickle cell is more severe than Margaret’s granddaughter Samiyah’s. In a mousy voice, she speaks of pain in her lower back, her knees, her arms. She looks younger than her age, a not-uncommon side effect of sickle cell. Her father tells stories of long nights, sometimes multiple in a week, awake with Seleea.

“The first couple of years was truly hard, just knowing that she was so susceptible,” Demont says. “Her lungs and immune system wasn’t on par. Every time we’d go outside, she’d get sick. Every single month we’d be in the hospital.”

At Odessa Brown, they started getting some of the answers they needed, about causality, mitigation, and treatment. Dr. Bender gave them his personal cell phone number. “We felt more welcome than any other doctor,” says Demont. “That was pretty amazing.”

Eventually, Seleea started getting regular blood transfusions to reduce the concentration of sickle cells and the length of her hospital stays. That helped, but nothing cures sickle cell.

Without traffic, the drive from Renton to Odessa Brown is about a half hour. But on I-405, that can easily be stretched to an hour or more. And while Demont’s family has a car, for families that ride the bus, the route to Odessa Brown is indirect. From Renton, the ride approaches two hours.

Margaret, Demont, Telah, Samiyah and Seleea are all amazingly laid back about the commute. Part of that is because there is simply no other option. Their willingness to drive is a product of habit: By Samiyah or Seleea’s age, they’ve made the trip hundreds of times.

The thing with sickle cell is that patients literally live and die by proactivity. In the ’70s, 20 to 25 percent of kids died almost immediately because of infection. But once doctors figured out what was going on, they started the kids on a regimen of penicillin and that statistic all but vanished. Now, all children are tested for sickle cell at birth.

After those first weeks, it’s extremely important for families to maintain a relationship with a clinic, says Dr. Bender. First of all, there are certain tests that can predict how at-risk a child is for stroke. If the families get that test, they can get treatment to reduce that risk.

If a family doesn’t know what to look for, if they don’t know to keep their child hydrated and warm, if the line between cranky and sick is unclear, a minor situation can become extreme very quickly.

“Sometimes people go swimming,” says Bender, “then feel pain and they don’t associate that with sickle cell. Sickle cell is really complex. It’s hard for people to learn all this stuff.” The life expectancy for sickle cell patients is 48 for women and 42 for men. But depending on proactive care, that can range from as short as 30 to as long as 70s and 80s.

So what happens when a disease that requires vigilance, communication, education, and, says Bender, a community, moves further from the one place families trust to get those things? In some cases, the hours many families stand to spend in cars and on buses is enough of a deterrent that a manageable disease will become unmanageable.

Dr. Bender says that staff members have always worked to create support systems between families who live near one another. “If we know there are two families in the area, we’ll ask if they want to be connected,” he says, “Sometimes that’s geographic. Sometimes for the foreign patients, we put them together and they form a very tight network.”

The clinic has even considered group visits, a rare thing in the medical world. “One-on-one, people get their spiel and move on,” says Dr. Bender. “But what would happen if you were there with six other people and each of you were asking questions. Many would ask questions that weren’t on your list.”

The visits have begun to change as well. Dr. Danielson will spend longer with families, connecting them with more services and resources. “It pushes us to be more comprehensive,” he says.

The list of what’s possible when a clinic directly serves its community goes on: carpooling, sickle cell day camps, community groups, babysitting, communication with nearby school nurses. “We’ve tried to build up trust,” says Dr. Danielson. “It’s our No. 1 commodity. It’s extremely valuable. And once you’ve lost it you can’t regain it.”

But those connections are fading. When people spend hours on buses, coordinating visits, or lunches, or information sessions becomes near impossible. Odessa Brown staff, meanwhile, don’t have the school relationships in Everett or Tacoma that they do at Bailey Gatzert Elementary down the road.

“When I came to the clinic in 1998,” says Bender, “all the zip codes of patients were from Seattle.” Now, he says, almost none of them are. “It used to be that when families lived in the Central District, they knew lots of other families with sickle cell. The schools knew too. Now, so many families don’t know other families with sickle cell.”

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When Mayor Ed Murray rolled out the tenets of his affordable housing “grand bargain” in early September he lamented the fact that many families pushed from Seattle had to change their healthcare provider. But for the families of Odessa Brown, there is no changing provider.

Dr. Danielson has launched efforts to find sister clinics – sort of outposts more convenient to families. But, he says, he hasn’t found more than one or two candidates between Everett and Tacoma.

So the powers that be at Odessa Brown are seriously considering a move south, into the Rainier Valley, where there are more African American families. And yet, says Dr. Danielson, they’re unlikely to find the same concentration they had before. “There’s no one spot that makes sense for us to be in. It’s like someone took a bucket of water and threw it across the county.”

Demont Corneleus is afraid that something of a feedback loop is being created: As families dealing with sickle cell, and really all the health issues specific to black Americans, are pushed into the suburbs and out of view, the urgency to treat these issues will vanish as well. “People will just push it aside,” he says.

Sickle cell doesn’t have a face like cancer or AIDS does. It may be a genetic disease, but the truth is that there is a three-way correlation between sickle cell, African Americans and poverty. So while cancer crosses demographics, catching the attention of rich and poor alike, sickle cell aligns with less money and therefore less influence. “You can start tying sickle cell into every aspect of racism,” says Bender.

Odessa Brown is under the umbrella of Seattle Children’s Hospital and is therefore relatively stable. Still, there’s something precarious about how much poor and minority families depend on its existence. When asked what the Corneleuses would do without Odessa Brown, Demont’s eyes widen. “I’ve never considered that,” he says. “I don’t even want to think about it.”

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Debating the meaning of a growing and changing Seattle is a discussion that will play out as long as people continue to move west. It’s impossible to ignore that, between the markings of African American culture, the Yesler corridor is increasingly walled in with new construction as those seeking housing migrate south from Capitol Hill. The right-angle townhomes so common now in Seattle pop up between old homes like grass through a sidewalk. Crest the hill from downtown and the parks and community centers named for famous African Americans seem in danger of becoming exhibits in a museum rather than centerpieces of a community.

Assessing and reacting to that change is the work of city hall, community organizations, and concerned citizens. People will bemoan the growth, questioning its disproportionate impact and the ripple effect of a population cast to the suburbs. Some will be dubbed Urbanists, other NIMBYs, the whole while living in the middle of it all.

But in talking with Doctors Danielson and Bender, the conversation takes a heavier tone. Community for them is not an abstract notion, but a public health necessity. As that community scatters across the Puget Sound region, it’s the Hippocratic oath rather than feelings about urbanism or politics that drives their frustration.

On a broader level, says Dr. Danielson, many in the African American community don’t see themselves in their own care, both in the resources available and the color of their doctors’ skin. It was a problem for Ms. Brown and it’s a problem today.

Odessa Brown has always been about more than treatment. “People come in and say ‘We’re home,’” says Dr. Bender. “There’s a sense of ownership, of being treated as an individual.”

But that sense of ownership was, in many ways, built around a Central District that looked much different than it does today. Say what you will about growth in Seattle, but the African-American community is on its way out, a fact as true as the new buildings along Yesler way.

The fear for the staff at Odessa Brown, the longtime anchor on the top of the hill, is that everything they do between the lines of traditional medical care will go with it.