Tevin Coleman—a runner-up for the San Francisco 49ers—and his wife, Akilah Coleman, are sharing their experience raising a child with sickle cell disease.
Tevin & Akilah’s daughter, Nazaneen, diagnosed as an infant: ‘I knew something was up’
In one sitting down with PersonThe couple shared how they welcomed their twins Nazaneen and Nezerah in 2017.
However, they knew “quite immediately” that “something happened”. At 4 months old, Nazaneen was diagnosed with sickle cell disease.
“I know something happened. My son, they knew he didn’t have it but right away, with my daughter, we had to go back and do a few different tests because they knew something was up. It has been confirmed for about four months.”
What exactly is sickle cell disease?
For context, the condition is described as “a group of inherited red blood cell disorders” that cause cells to have a crescent shape as opposed to their usual disc-like shape. According to the Centers for Disease Control and Prevention, sickle-shaped red blood cells can lead to many problems in the body.
“Sickle cells die prematurely, causing an ongoing shortage of red blood cells. In addition, when traveling through small blood vessels, they become trapped and block blood flow. This can cause pain and other serious complications (health problems) like infections, acute chest syndrome and stroke.”
There are many different types of the disease, with the “most severe form” of the genetic condition commonly known as sickle cell anemia.
Raising sickle cell awareness will help drive funding for research, treatment and care. Spread the word on social media and let your friends and family know. For more information visit our website link in the bio #sicklecelluk #crescent crescent #awareness #photo of the day pic.twitter.com/hJEnqkfdKj
– Sickle Cell Consortium (@SickleCellUK) January 10, 2023
Colemans Wants to ‘Talk About It and Just Raise Awareness’
Tevin and Akilah note that—while they knew they carried the sickle cell gene, they weren’t fully aware of how the condition would affect their family.
They also note that, as their daughter continues to become more aware of her condition, they want to focus on promoting education about sickle cell disease while also teaching Nazaneen to be open about how she feels.
“She’s only 5 years old so we haven’t gotten to the point where I can really explain to her what her body is going through, but I’ve let her know that it’s really important to always tell mom—no matter what. How are you feeling, whatever. you’re going through, tell your mom. Let’s talk about this. Don’t be afraid to tell me if you’re in pain, so I can help.”
Tevin added: “Now that she’s older and she’s learning and understanding that she has sickle cell disease, I wanted to talk about that and just to raise awareness.”
How the family supported Nazaneen through some of the trials of conditions
In addition, the Colemans addressed a number of different ways they had to adapt for the sake of their daughter.
First, they don’t let her out if it’s too cold, because it’s important for people with sickle cell disease to stay warm.
“For my daughter, she doesn’t leave school if the temperature is below 50 degrees. I have to keep him warm, and when he comes home from school, I have to check his fingers and toes. I had to ask her if she had any pain, was there any pain, or if she was in pain. And she was really in pain, she had pain in her legs and feet.”
Being cold increases your risk of sickle cell disease, so it’s essential to stay warm as much as possible. With the weather dropping to -10 across the UK, our communities must stay warm during this challenging time. #sickle #sicklecellsociety #nhs #cold #weather #5 ways pic.twitter.com/n9AuPQqDpT
– Sickle Cell Consortium (@SickleCellUK) January 23, 2023
However, they will definitely try to make it fun by “disguising a lot of things [they] Make her feel like she’s taking care of herself.
“I would just say, ‘Okay, we’ll have a spa day.’ I would massage her legs and do a mani-pedi, kind of massage her feet and get her blood flowing because the one thing I don’t want to do is scare her too much.”
Akilah added, “I want her to be able to identify her feelings, but I also want to protect her…I want her to be able to express her feelings without fear.”
As for Tevin, he notes that a big part of their journey stems from staying positive.
“Every time my daughter has a crisis or is later hospitalized, we try to encourage and keep her positive. We do that by throwing a party for her when she comes back, giving her a cake, giving her toys, just to make her laugh.
Thank you to the Coleman family as they continue to cruise these waters and raise awareness of their daughter’s condition.