
Receiving an unexpected diagnosis can be life-changing for patient and caregiver alike. When Nathalie Coleman learned her daughter, Savanna, would be born with sickle cell disease, she knew the future was uncertain—but her love for her daughter was not. Together, they are committed to embracing the joys and challenges life brings while spreading kindness however they can.
Nathalie Coleman wanted to ensure that even during her pregnancy she was providing the best for her daughter. So, when a visit to a genetic counselor revealed that her child was positive for sickle cell, the diagnosis inspired serious and unanticipated reflection. “I remember going home in a distressed state—I had no idea what sickle cell was or the severity of it. I just did not know.” Nathalie and Steven, Savanna's father, were informed that they both were sickle cell trait carriers. But to learn that their child would be the one to live with the illness was heart-wrenching. Nevertheless, Nathalie committed herself to building the best life possible for her daughter. “I decided to go forth with my pregnancy: I accepted the challenge because she was worth it.”
Savanna, famously known as Savvy, developed normally for the first few months after she was born, until swelling and other severe symptoms started to manifest. “Her first crisis was a couple days before her first birthday,” Nathalie remembers. “She was a chunky and vibrant baby... her first big party was being planned but things were were not seeming right. She wasn’t eating, she was crying more than usual and she wasn't as happy as she usually was, I realized her demeanor was off.” Guided by her intuition, Nathalie brought Savvy to NewYork-Presbyterian Brookyln Methodist Hospital's emergency room where she learned her daughter was having a sickle-cell flare up in her hands and feet. “I wasn’t aware of the swelling in her hands and feet due to her being chunky.” This would be the first flare-up Savanna and family would experience and the beginning of their continued relationship with Child Life Services and other care teams at NewYork-Presbyterian Brooklyn Methodist Hospital.

Nathalie committed herself to her daughter immediately—never leaving her side as she continues to grow. Savanna’s family also sprung into action to be a consistent part of her journey, with Steven, her grandparents, aunts, uncles, and extended relatives ensuring that they are a daily part of her life. “I just don’t know how I can ever show my full gratitude to the Savvy village for playing an intricate part in her journey.” Nathalie says. “In the first three years of her life, Sav didn't know what was going on with her physically. She’s on a medication regimen every day, she’s visiting the hospital frequently—at one point she was at risk of having a stroke. I felt like every time I went for a hematology or cardiology appointment, we could never get good news. That’s when I started creating a bond with the staff. … They feel like your healthcare family.” Nathalie constantly sought support from the teams at NewYork-Presbyterian Brooklyn Methodist: questioning clinicians, collaborating with staff, and working to ensure Savanna was still able to enjoy those early years amid a flurry of hospital visits and sickle-cell-related issues.
Nathalie remained vigilant about Savanna’s condition while teaching her daughter to also be observant. "I taught Savvy that she was normal like other kids, but was just born extra special. She wanted to learn how to swim, I had to search for a swim school with a pool at a certain temperature. She was taught to stay hydrated by drinking a lot of water, getting good rest, being mindful of certain weather conditions and dressing appropriately- there are a lot of barriers that have to be kept in mind,” Nathalie says. “Savvy and I are extremely close, and I’m also her teacher. It's one thing to be a first time Mom, but now to add this medical condition on top of it, it was and still is a lot to digest. To see her in excruciating pain, I wish it was me everytime. Motherhood came with challenges, but it’s driving me more to impress her. I want Savvy to be proud of me as her Mom, because I am definitely proud of her as my miracle! Seven years later and she posses undeniable strength, an adult-like mentality and a beautiful heart. Sav and I are the authors of our book; nobody else is.”
Thrust into a world of caution and learning, Nathalie was overwhelmed, but she wasn’t alone. As Savanna grew, so did her ability to support her mother. "Between 3-4 years old, I started having her say 'I have Sickle Cell'." Nathalie educated her daughter thoroughly about her diagnosis, explaining to her that her blood not getting enough oxygen was a source of her pain. "I would tell her why we were going to the doctor and what was their position. With that continuous practice, Savvy is able to let you know what color her daily pill is, when it’s time to take her medicine, etc. She’s intentional and aware and able to articulate her needs very well,” says Nathalie. “I am so proud of this little girl. … Anytime I start to cry during her unpleasant hospital visits, she stops crying to worry about me. How is this little girl going through this and she’s so concerned about my well-being?”

Balancing joy with responsibility is critical to Nathalie and Savvy’s relationship, and Savanna embodies the lessons her mother teaches her with confidence. “I’m her advocate, and if I’m not around, Sav has to advocate for herself,” Nathalie offers. “I had to get comfortable knowing she could have a crisis no matter what, and I have to manifest positivity. I use whatever opportunity I can to bring joy: taking her on trips, dancing with her, going out to eat and reminding her how much I'm in love with her—whatever I can offer her.” Witnessing her daughter’s resilience and intellect is very inspiring for Nathalie. “Savanna is involved in every aspect of her treatment, she's even beginning to ask the doctors' her own questions. Savvy is very social and loves to spread kindness to others. Even though going to clinics can be scary, she’s still happy to see certain staff. She’s very familiar with the good and the bad of her life.” Be it paying for a stranger’s meal or providing gifts to children they encounter locally and when on vacation, Nathalie also makes sure giving is an important family practice that Savanna is a part of. “We’re always going to need help, no matter how small or big. I like to help as much as I can,” says Nathalie. Inspired by her mother’s generosity, Savanna will often bring extra food to school to share with classmates who are without lunch.
The kindness the family possesses help energize their relationships with compassionate team members at NewYork-Presbyterian Brooklyn Methodist. “I applaud the Child Life Specialists because they have been emotionally supportive. … It never feels like I can’t reach out to them. Even if they were off the clock, I didn’t feel like they would dismiss me.” Her hematologists, nurses, and other care professionals also go above and beyond to ensure Savanna and Nathalie are cared for. With Savanna now seven years old, the bonds formed between the family and the teams at the hospital are a heartwarming example of the power of care. “Checking on you at the ER, offering to transport Sav, being intentional and hands-on—they’ll even come to an outpatient appointment to be supportive,” Nathalie recalls. “They are throwing positive events to let the children know that they have a disease, but the disease doesn’t have you.”

“I incorporate her in her community: she participates in sickle-cell events and she’s involved in a pediatric support group organized by the Child Life Services department,” emphasizes Nathalie. “She can interact with other kids who have SC. There’s activities that offer fun and education.… It doesn’t always have to be a negative memory of being in a hospital.” Nathalie herself is in a sickle-cell support group for caregivers dealing with this illness. “It still takes me a lot to speak about it..but I started letting my guard down and opened up about my fears and hopes, and they accepted me. The group allows us to help one another. Don’t ever feel bad for feeling bad. It hurts to see your loved one hurt.”

For Savanna and Nathalie, life with sickle cell isn’t about denying joy but meeting it with responsibility and, most importantly, acceptance. Nathalie aspires to write a children’s book about Savanna’s experience, hoping to help other children who live with sickle cell disease and spread awareness. "Living a Savvy life is a chant that I intend to continue to bring to life."
“If you don’t accept the diagnosis, it’s going to be hard to get to the other steps,” Nathalie says, offering resounding support for caregivers. You got this. It’s going to be hard; it’s going to be challenging … but you got this. Do your own research, respectfully speak up and ask questions for clarity. You’re going to find a village you didn’t even know you needed, embrace it. Its ok to receive a wellness check as a caregiver....their life is your life too. All your emotions are absolutely warranted, but the first thing you have to do is accept the diagnosis, then stand up to it and defeat it as a team.”