Tevin and Akilah Coleman are determined to make a difference.
The NFL star and his wife both knew growing up that they carried the sickle cell gene but didn’t realize how that would impact them as they started their family.
Speaking with PEOPLE to discuss the auctioning of his cleats as part of the NFL’s My Cause, My Cleats, the veteran running back and his wife shared how their journey into sickle cell advocacy began after their daughter Nazaneen was diagnosed.
Tevin and Akilah welcomed their twins, Nazaneen and Nezerah, in 2017, and found out about Nazaneen’s unique health needs when she was just an infant.
“I knew something was up,” Akilah tells PEOPLE. “My son, they knew he didn’t have it but pretty instantly, with my daughter, we had to go back and do a couple of different tests because they knew that there was something going on. It was confirmed around four months.”
The couple quickly learned a lot about how to manage the symptoms Nazaneen faced but weren’t ready to go public with their story right away.
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“I just wanted to protect my daughter when I first learned she first had it,” Tevin, who began experiencing symptoms of sickle cell himself as a college athlete, tells PEOPLE. “I wanted to protect her — from the public, from everybody. So that’s why I didn’t say anything at first.”
With the twins turning 5 in November, Tevin wants to show his daughter that there’s no shame in her illness and what she needs to do to care for herself.
“Now that she’s getting older and she’s learning and understanding that she has sickle cell, I wanted to talk about it and just raise awareness,” he shares.
Adds Akilah, “She’s only 5, so we haven’t gotten to the point where I actually explained to her what her body is going through, but I have let her know that it’s just really important to always tell Mommy — whatever you’re feeling, whatever you’re going through, tell Mommy. Let’s talk about it. Don’t be scared to tell me if you’re in pain, so I can help you.”
Akilah is raising the twins at the couple’s home in Atlanta, a challenge as Tevin currently plays on the San Francisco 49ers, but also for Akilah as she tries to keep Nazaneen healthy in the cold-weather months.
“For my daughter, she does not go outside at school if it’s below 50 degrees. I have to keep her really warm, and when she comes home from school, I have to check her fingers and her toes,” she explains. “I have to ask her if she has any aches or if anything hurts, or if she’s having any pains. And she has been having pains actually, she’s been having some pains in her legs and her feet.”
Adds Tevin, “You definitely have to keep your eyes on her at all times, just to make sure she’s not having any crisis. We try to prevent her from going to the hospital by checking her temperature, making sure her body’s not too hot but not too cold, making sure that she’s hydrated and eating well.”
The mom tries to keep things light by “disguising a lot of what we do for her as self-care.”
“I’ll just say, ‘Okay, we’re gonna have a spa day. I’ll massage her legs and do a mani-pedi, kind of rub her feet and get some of that circulation going because the one thing I don’t want to do is put too much fear in her.”
Still, Akilah and Tevin are careful to strike a balance so that Nazaneen can appropriately advocate for herself as she grows.
“I want her to be able to identify what she’s feeling, but I also want to protect her, in a sense, in her childhood,” Akilah shares. “I want her to be able to vocalize what she’s feeling without being scared.”
Though Nezerah doesn’t know what’s going on with his sister either, he is “protective” as her twin.
“It’s almost as if he knows. He’ll just bring her a blanket or water. He’ll be like, ‘Sissy’s cold or Sissy needs to drink some water.’ She won’t say anything but he’ll just go and get it and give it to her. So I do think that there is a special bond that they have and he’s able to identify some things that she’s going through. Maybe he just sees the signs in her, but it’s something that I appreciate.”
The family is also working on using their platform to give a voice to sickle cell — especially for Black families facing the disease.
“One of the big things that we discussed prior to coming forward was how Tevin wanted the community to have a face for sickle cell and then to know that there’s someone out there that relates to them and understands them, because sickle cell is worldwide,” Akilah notes, sharing how Liberians (where Tevin’s parents are both from) and other Africans experience the disease at elevated rates.
“People reaching out to me on social media, telling me their story, and I’ll message them back. And they’re surprised, like ‘I never thought I’d get a message back from you.’ But that’s why I’m doing this, I’m here to help,” Tevin says. “I’m just giving them my light, sharing my situation, my story and giving them hope.”
The NFL star acknowledges that “it’s definitely ugly at times, but we try.”
“Every time that my daughter does have a crisis or she is in the hospital afterward, we try to uplift her and keep positive vibes. We do it by throwing a party for her when she gets back, giving her a cake, giving her toys, just to make her smile.”
The family was able to make an especially great moment happen for Nazaneen last January when a snowstorm landed in Atlanta around the same time the family was celebrating Christmas.
“What we do in our household is we celebrate the holidays when my husband comes back home, since we don’t get to really spend a lot of holidays with him. Last year when he came home, it was actually in January and we ended up celebrating Christmas then,” Akilah explains.
“We had Christmas trees, full-on Christmas morning. It was the one day in Atlanta that it snowed,” she continues. “So my husband and I, we went outside and collected buckets of snow, and we brought them in the house because we don’t let our daughter outside in the cold. So we collected buckets of snow. We lined our furniture with painter’s plastic, and we had a snowball fight in the house with my daughter.”
Not only was the moment one that couldn’t have happened otherwise for Nazaneen, but it was fun for Nezerah too.
“My son was off to the side eating the snow,” she laughs. “And then my daughter was really competitive, throwing the snow. She was on Daddy’s side, of course, throwing snow aggressively at me.”
“It’s things like that that really make you appreciate the twin aspects but also, that’s something that we wouldn’t have done if she didn’t have sickle cell,” Akilah points out. “So you see, we just find ways to put positive spins on our reality, and we find moments to just have fun as a family, in a lighthearted way. That’s what we’re doing, and it’s amazing.”
The game-worn cleats up for auction now were designed with Nazaneen’s spirit in mind and will benefit Sickle Cell Disease Association of America. Bids on the item will continue through Feb. 17.