The future that Nyome Kamara envisioned still sits in plastic.
At the beginning of last year, she moved the adult day-care center she founded for young adults with intellectual and developmental disabilities into a larger building, one that would allow her to pull more names off the wait list and expand services to children.
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More than a dozen young adults have come to depend on the building in Manassas, Va., as a place where they can spend their days with friends and staff members who know them and their needs. Kamara was working to create a similar outlet for children with intellectual and developmental disabilities on the other side of the building, and despite the pandemic limiting funding and the construction hitting snags, she was only a few tasks away from making that happen.
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Families had already expressed interest in enrolling.
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Chairs, toys and other equipment had already been bought.
But on June 3 — before Kamara could see any of those chairs and toys unwrapped from their plastic coverings and set up — she died unexpectedly after a lifelong battle with sickle cell disease. She was 35 and leaves behind a husband, two children, ages 5 and 7, and a nonprofit that her best friend and husband are trying desperately to keep from being lost along with her.
No one expects to look through the depths of their best friend’s office files and work emails without them, but that’s how Jacqueline Jewell now spends her days.
In the two months since Kamara’s death, Jewell has read through her business plan, scrutinized her budget and pleaded with officials for help, all in an attempt to keep the nonprofit from shutting down and leaving the Virginia families who depend on it with nowhere to go.
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“I don’t know where else the community is going to get this kind of care,” Jewell says. She recalls once asking Kamara why she chose the work. Kamara told her she knew how it felt to be shunned and made to feel a burden because of her sickle cell disease. “She went into her field of work because she never wanted anyone to feel rejected for who they were.”
Jewell sometimes talks out loud to Kamara, and she does so as we speak on a recent evening about the business plan she found tucked in one of Kamara’s files.
“I’d seen it before, but I hadn’t read it thoroughly — Forgive me, Nyome,” she says. “But reading it, I could feel how much she cared for the community she was serving. She was a genius and what she wanted to accomplish for the community is so beautiful.”
As she tells it, Kamara, who was born in Liberia, opened the Bright Center in 2016 in a rented space she shared with a church. She started by serving eight young adults. In the years that followed, that number grew to 152 and the new building was going to allow her to serve even more.
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Her business plan called for the center to eventually open a coffee shop that would offer some of the young adults an opportunity to receive job training and interact with the public. She also envisioned bringing in health specialists so that those young adults wouldn't have to worry about stepping into the office of an optometrist or a speech therapist. And if families have multiple children with intellectual disabilities, opening the other side of the building would allow siblings to attend the same center.
“Nyome, how did you do all this?” Jewell has found herself asking Kamara often lately.
In the past, Jewell attended events organized by Kamara, but she says it was only when she started looking into how to keep the center’s doors open that she realized how difficult it is to secure funding and how great the need is for what the center offers.
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After high school, many young adults with intellectual and developmental disabilities are left without services they have come to depend on, forcing their parents and guardians to make difficult decisions: Do they quit jobs to take care of them? Do they place them in assisted-living facilities? Do they trust a stranger who may not have the proper training to come into their homes and take care of complicated needs?
During the pandemic, the center was limited to serving only 10 young adults. Imani Bush, who is 23 and autistic, was one of them.
“Nobody does what they do,” her father, Phillip Bush, says of the center. “All I have to do is get her up in the morning. They pick her up, they feed her, they have fun activities — before covid, they would go on field trips — and then they bring her home in the evening.”
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His daughter has friends at the center, he says, and it gives her the structure she needs to feel comfortable. It also allows her parents, who both have full-time jobs, to work.
“I don’t know what we’ll do,” Bush says of the possibility that the center will close. “There’s nothing like it out there. We’ve looked. I was on Care.com, trying to find someone to fill in. I searched for months.”
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Right now, he says, the family is trying to figure out whether they would be okay if his wife has to quit her job. The center accepts Medicaid waivers, which makes the family’s cost significantly less than what they would have to pay someone with training to take care of Imani.
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“There are so many lives that are impacted by that center being there and being open,” Bush says. “The government needs to step in, whether federal or local or state. We need somebody to come up with a way.”
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He describes his daughter as being so in tune with other people’s emotions that if someone is crying, she will try to comfort them and then start crying herself. For that reason, he and his wife have not told her why Kamara is gone.
Jewell says if she wasn’t working to save the center, she would likely be spending her days crying nonstop. She describes Kamara as more of a sister than a friend.
In May, their families went to Disney World together. Kamara planned the trip to celebrate her 5-year-old son’s birthday. Shortly after they returned, she grew ill enough to become hospitalized.
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On Thursday, she would have turned 36.
On Friday, the center plans to hold a fundraiser that will see food trucks donate their profits and a reptile expert offer photo opportunities. But Jewell already knows the event won’t raise enough money to save the center. She has done the math. Payroll adds up to more than $21,000 a month, the building’s rent costs $12,300 a month, and then there are utility bills and other expenses.
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In hope that crowdfunding might help, Jewell created the Nyome Kamara Fund, a website where people can donate. At first she worried that she set the goal too high and the amount would scare off potential donors. Then she saw all the bills and learned that much of the pandemic crisis funding set aside to help nonprofits was gone, and she realized that she set the goal too low.
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By her calculations, $210,000 is needed to keep the center open through the year and see those chairs, toys and equipment unwrapped and finally put to use.
“If we lose, we lose, but I just can’t not try everything,” Jewell says. “She would never stop. If the shoe was on the other foot, she would be doing this and more for me right now. That’s just the type of person she was.”
She was the type of person whose best friend still talks to her — and hopes to soon tell her some good news.
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