For a long time, soccer wasn’t really part of Zariya’s world. She had never been interested in sports, and it was understandable why. For many children living with sickle cell disease, physical activity can come with limitations and uncertainty.
But then Zariya became a member of the Fordham soccer team, and slowly, something changed.
“Zariya has become more outgoing and willing to try new things,” her mom, Simone, said. “Before joining the team, she had no interest in sports because sickle cell anemia limits her ability to participate in sports.” Now, with her teammates by her side, Zariya proudly walks out with the team captains at the start of games and enthusiastically cheers the team on during games. She rocks her team jersey and captain arm band and tries to always be at home games. “It was fun to watch her kick around a soccer ball at half time of one of the games,” Simone remembered. “She enjoys cheering on the team and even encourages me to stay until the end of the games.”
For Simone, memories like these bring to life moments she worried her daughter may never get to experience. “Our family’s journey with sickle cell disease has been unpredictable at times,” Simone said. Zariya experienced her first pain crises at 2.5-years old, and she spent six months in the hospital. Six months later, she was hospitalized again for another week. Six months later, she found herself in the hospital again for another week. At four years old, there was another hospitalization. Then, after five and a half years without one, another hospital stay. This pattern continued for most of Zariya’s life, often accompanied by bad colds and other sicknesses. “Sometimes, it felt like sickle cell was the Boogie Man waiting to jump out at us,” Simone said.
Over time, Zariya and her family learned how to accommodate to the unpredictability. Simone drove Zariya to school in the cold months to protect her from the harsh cold. They planned activities they knew Zariya could participate in. They continued to find ways to have fun as a family. “Zariya’s resilient spirit makes it easy,” Simone said. “She is quite determined.”
Her unbreakable spirit and determination shines everywhere she goes and with everyone she knows. “Zariya is one of my biggest inspirations,” said Zahara, Zariya’s older sister. “I’ve seen her experience countless challenges, big and small, and come out a better person. She’s intelligent, enthusiastic, kind, genuine, charismatic, and countless other character traits that are too many to mention. As my younger sister, I see her as a friend that will always have my back, my partner-in-crime, the child I will always want to protect, and, most of all, a person I can only wish to grow into being half as bright as.”
Even when struggling or in pain, Zariya inspires those around her with her positivity and resilience. Now, as part of the Fordham soccer team, she gets to share that with even more people. “Sickle cell is frequently an invisible disease,” said Rebecca Carr, MSW, Case Manager at Team IMPACT. Though the main effect of sickle cell disease is severe pain, it is often difficult to see or understand what the child is enduring, Rebecca explained. And that can be isolating. “Matching a child with sickle cell disease with a team gives them a place where their medical challenges are acknowledged and the child is seen for what they can do, not what they can’t. They receive unconditional love and support.”
As part of the team, Zariya has grown in more than one way. She has expanded her support network, found new interests, and bonded with life-long friends and mentors. “Team IMPACT is a wonderful experience for children,” Simone said. “The Fordham women’s soccer team welcomed Zariya, and it has been so fun to see her transform from a child not interested in sport to cheering on her team. Zariya, who wears jersey #10, even watched the World Cup this year and was excited to see how many other great players wear #10.
In addition to finding a new sport to love, Zariya has also come out of her shell around her teammates and felt genuinely connected to the team. “Zariya has relaxed and become more comfortable with the team over time,” Rebecca said. “She opens up to them now and has bonded with them. And the team has been wonderful about sending letters to Zariya over breaks. She writes back to each one of them.”
For a child who was once completely disinterested in sports, this transformation has been powerful—physically, socially, and emotionally. “Sickle cell disease, once managed with medicines, a healthy diet, knowing your limitations, and making sure proper accommodations are accepted and enforced in school or work environments, is a manageable condition,” Simone said. “Zariya ensures she hydrates regularly and participates in daily activities but is conscious of her limitations. Zariya hasn’t had any crises since joining the team.”
But perhaps just as important as the practical ways Zariya manages her condition is the confidence she has developed and the pride she feels in being a member of the team. Simone’s advice to other children living with sickle cell is advice that Zariya is proud to embody: “Be confident, don’t feel embarrassed that you are different. Speak up when you’re feeling pain or feel dehydrated. Speak positive words and affirmations to yourself. When you’re comfortable, educate those around you about your condition.”
This September, we celebrate Sickle Cell Awareness Month and all kids like Zariya living with sickle cell disease. We recognize our partner, Vertex Pharmaceuticals, for their work in the sickle cell community and our shared mission to get more kids living with sickle cell disease matched with a team of their own.
