NFL Star Tevin Coleman, Who Has A Daughter Living With Sickle Cell, Advocates For People Facing A Similar Battle

Oct. 27, 2019 was an unforgettable day for Tevin Coleman. Not just because he scored four touchdowns to lead the San Francisco 49ers to a 51-13 victory against the Carolina Panthers, but also because his precious little girl was in attendance to witness the epic performance.

The post NFL Star Tevin Coleman, Who Has A Daughter Living With Sickle Cell, Advocates For People Facing A Similar Battle appeared first on Blavity.

Earlier that month, Tevin and his wife Akilah didn’t know if their baby girl Nazaneen would ever have such an opportunity. The couple were simply praying for their beloved daughter after she remained hospitalized for two weeks while dealing with acute chest syndrome, which is defined as a “severe lung-related complication of sickle cell disease” according to the American Lung Association. 

Tevin anxiously hoped for the best as he remained with his team in San Francisco while his daughter stayed in a hospital in Atlanta, where the family lives. 

“They was down here and I was up there in San Francisco,” he told Blavity. “It was real tough for me just to see her in pain and her going through that and I couldn’t be there to protect her, put a smile on her face.” 

But there was no shortage of smiles when Nazaneen recovered and traveled to her daddy’s football game, along with her mom and twin brother. 

“They actually let her travel, they let her come to San Francisco and she came to the game,” Tevin said. “I had four touchdowns. I gave two balls to her and two balls to my son.”

Tevin and Akilah gave birth to Nazaneen and her twin brother Nezerah in 2017. But life took a dramatic turn when Nazaneen became diagnosed with sickle cell disease at 5 months old. 

Tevin and Akilah were terrified at first. In the days that followed, however, the couple said they learned that sickle cell disease is not a “death sentence.”

“We went through the motions of course, we were very emotional, we were devastated, heartbroken, we were scared for her future, but ultimately we knew this is our reality and we’re going to protect her,” Akilah told Blavity.

“It was real tough, it was hard. But we just had to hit the ground running and just figure out more about sickle cell and how to prevent our daughter from having pain,” Tevin added.

While they are protecting their daughter, Tevin and Akilah have also dedicated the past five years to helping other families facing a similar situation. The goal, according to the couple, is to share their story and “create a new perspective to sickle cell.”

“It’s about really becoming that change that we want to see,” Akilah said. “We don’t want sickle cell to be something that is feared.” 

Tevin and Akilah consider themselves as “twin flames.” That’s mainly because they share more common traits than the average husband and wife. The couple come from immigrant backgrounds. They also grew up in the Midwest. Additionally, they both carry the trait of sickle cell, which is defined as a lifelong, inherited blood disorder. 

Tevin has felt the symptoms of sickle cell throughout his life. But he didn’t understand what was happening to his body until his college years at Indiana University. As he continued to experience frequent dehydration and cramping on the football field at that time, Tevin learned what was happening to his body.

“He was having complications in little league and in high school. Even though he didn’t understand what was going on, he knew that his body was reacting differently than his teammates,” Akilah said. “When he got to college, that’s when he found out that he has the trait.”

For Akilah, the experience has been less severe.

“I actually did not have any complications,” the mother of two said. “I knew that I got fatigued and things like that, but nothing to where it was alarming. I was always made aware that I had sickle cell trait, but there wasn’t any type of education behind that to really understand the magnitude of sickle cell trait.”

The couple suspected from the beginning that at least one of their twins may also have the sickle cell trait. 

“We knew that there was a chance that either one of them or both of them or neither one of them would have sickle cell,” Akilah said. “With our daughter, we had a hunch because there were some labs that didn’t look up to par. She had to stay in the hospital a little extra longer, so we kind of knew. We were bracing ourselves, praying for the best of course and she was diagnosed I’d say around maybe five or six months.” 

In the following years, Akilah and Tevin made it a goal to give their daughter the best childhood possible despite the circumstances.

“We knew it would change our lifestyle absolutely, but we also knew that we were going to take the approach of preventive maintenance and just more of a positive outlook on it,” Akilah said. “We wanted to protect her childhood as any parent would. Especially a little Black girl, it’s very important that we protect that innocence and protect that childhood. We knew that of course it would be difficult and we would all have to make changes, but we didn’t single out her changes. We made her changes our changes, so whatever it is that was best for her, that’s what’s best for all of us.” 

Reflecting on his own experience with sickle cell, Tevin remembers the type of support he received from people who understood his situation. The NFL vet is especially grateful for leaders like Deland McCullough, who accommodated Coleman’s needs while coaching at Indiana. 

“He was fortunate to have a good coach and a good coaching staff. He had a Black coach that respected his journey with the trait, did not deny him those breaks and water breaks and he listened to him and he trusted my husband, being honest about what he was feeling,” Akilah said. 

To have somebody that understands a person’s journey with sickle cell is rare, Akilah adds. 

“A lot of people believe that if you have the trait you don’t experience symptoms,” she said. “While that is true for me, I’m also not a highly active professional athlete. Whereas my husband, he’s had situations where he has actually passed out. So I think that’s important to say that sickle cell is not a one-size-fits all. Sickle cell affects everyone differently and I think that really needs a lot of acknowledgment especially in the medical field.”

Tevin has played for the Atlanta Falcons, the New York Jets and the San Francisco 49ers in his NFL career. But his family has been staying in Atlanta the whole time. 

Atlanta, Akilah said, has provided the best care for their daughter.

“My husband, he’s on the road, so for us ,we’ve tried to follow behind him and go to the NFL teams that he’s going to and go establish roots in those areas, but we found that honestly her care network is best suited here in Atlanta,” Akilah said. “This is where they are most familiar, this is where Black healthcare thrives and we knew that this was the safest place for her.” 

Nazaneen has those days where the pain is especially brutal, causing her to miss school. When such types of days occur, the 5-year-old receives care with a massage or a spa trip with her mom. 

“Our weather is changing and it has been affecting her, so we’ve had a couple of spa days,” Akilah said. “We massage her feet and she says like ‘Mommy my legs hurt, my knees hurt.’ I will just say ‘OK, like, let’s do a little spa day, a little girls’ day. Or if she’s tired, we say ‘OK, you just need your beauty sleep.’ We really treat it like it’s not something to be afraid of, so that way that she understands she could be honest with us regardless of what she’s feeling.” 

For Tevin, it’s devastating to know that his daughter is in pain while he is on the road. But the NFL vet tries to comfort his family from wherever he is.

“We do FaceTime a lot and I just try to be there as much as I can to every doctor’s appointment,” Tevin said.

When the children miss their dad, Akilah plays Tevin’s football highlights on YouTube for them to watch. Those images are especially uplifting for Nazaneen when she’s having tough days.

“She’ll think she’s watching him in real time,” Akilah said. “For her that is good enough and that makes her feel good and it makes him feel good.” 

Although football comes with a sacrifice, Tevin and Akilah appreciate the platform they have because of the sport. Especially as millennials, the couple said it’s rare for somebody from their generation to have such a platform and speak out about sickle cell.

“There is no one that we’re familiar with in our generation that has spoken about sickle cell,” Akilah said. “So for us, it’s all about changing that narrative, it’s about getting the resources to the community.”  

Akilah is speaking of resources such as sicklecellspeaks.com.

“When you go on Sickle Cell Speaks, they actually have ways where you can find the doctors and the resources in your area,” the Atlanta mother said. “If you need a support group or even if you have a question, there’s an area where you can ask questions and you can find your village — because it does take a village.” 

While they still have many questions that need to be answered, Akilah and Tevin said the important thing is to continue to use such resources and build a strong network.

“We were fortunate enough to speak with some of the people that actually go out and educate — the doctors and physicians on sickle cell. They’re all over the country,” Akilah said. “You might not think that people care about sickle cell, but there are people who have dedicated their lives work to sickle cell and trying to help the sickle cell community. So that alone makes you feel good about where we’re going.” 

Tevin, who used to be afraid to speak out about the symptoms he was feeling, is now encouraging people to share their personal stories about sickle cell.

“I was just going through the pain and knowing I was going to pass out, knowing my body was going to lock up, but I didn’t want my peers to see that I quit,” Tevin said. “It’s important to just speak up about how you’re feeling and it’s OK to take breaks, it’s OK to get water, refreshen up and then come back and finish.” 

Akilah has her hands full at home while her husband is on the road. But she still finds time to dig up more research after a busy day of taking care of her twins.

“I literally will research until 3 a.m. I’m obsessed with helping my daughter,” she said. “Any resource that we have found, anything that we know of, we want to spread that.” 

Through their research, Akilah and Tevin can clearly see that the odds are stacked up against Black children. According to the Centers for Disease Control and Prevention, about 1 in 13 Black babies in the U.S. are born with sickle cell trait. There are also more than 100,000 people in the U.S. living with the trait, the CDC add. 

“When you’re discussing Black healthcare, regardless you always have to advocate for yourself and your rights,” Akilah said. “it’s important to just know what that means and talk to your doctor about it, because even if you and your partner have sickle cell trait, there are alternatives. But you need to discuss that with your doctor and don’t be scared.”

Speaking up also involves efficient communication with Nazaneen’s teachers, gymnastics coaches and other caretakers. 

“We talk to the coaches and we say ‘Hey, if you notice that she’s getting a little tired, have her take a seat,’” Akilah said. “If it’s too cold outside, you know we have a temperature — I think it’s important for every parent navigating sickle cell to have this conversation with their doctor, ‘What temperature is safe for our child to go outside?’ We know ours. If it’s under that, she can’t go outside.” 

Tevin and Akilah also schedule meetings with Nazaneen’s teacher and school nurse to “make sure they are fully aware of the family’s situation.”   

“That alone speaks volumes when you enter a room and say ‘Hey, I’m an active parent, I will be here and advocate for my child,” Akilah said. 

At home, there’s a different type of communication strategy the parents use to comfort their daughter.

“I think I would scare her if I really explain to her what her body is going through, so we basically listen to her,” Akilah said. “We ask her if she has ouchies. We actually have a little kind of chant that we say and that’s how we figure out if she has pains. We’ll like tickle her toes and we say ‘Do you have any ouchies? Are you hot? Are you cold?’ And she’ll say ‘Mommy, my toes tingle.’ And we’ll know her circulation might not be great right now.” 

Nazerah doesn’t yet understand what’s happening to his sister. But that doesn’t stop him from being the best brother he can be.

“Even when I was carrying my pregnancy, it always felt like he’s shielding her,” Akilah said. “When I watch how they communicate, it’s almost like he can kind of sense when something is coming. He’ll just go and fetch her water or he’ll bring her a blanket.”

Tevin and Akilah were initially hesitant to come forward with their family story, especially fearing how their experience would be perceived on a large platform such as the NFL.   

“You can imagine just how cruel fans can be just when it comes to football,” Akilah said. “When you throw in the family with that and you throw in a family battling a rare blood disease, it really can basically create a platform to just really receive really nasty comments.”

Despite their initial fear, the couple decided to go forward with sharing their story to the public. Their courage is now paying off. 

“It’s showing the community that they can relate to us, that there’s someone in the spotlight that’s very successful that understands what you’re going through, whether you have sickle cell trait, whether you have a child with sickle cell,” Akilah said. “We are trying to put a face to that. I think that is where it kind of gets dehumanized, because there is no face to sickle cell disease . . . When you see my husband doing interviews or scoring touchdowns you’re going to look at him and know like ‘Hey, that’s Tevin Coleman and he reps sickle cell.”