Strong little warrior: The inspiring story of Charlotte Hereford, a 5-year-old with Down syndrome who triumphs over leukemia

Meet 5-year-old Charlotte Hereford. To her parents, Darah and Rodney, and her 9-year-old sister, Abigail, she is an invincible little warrior, which is quite ironic considering the meaning of her name. “Charlotte” means “petite” and her middle name “Sloan” means “warrior.” Despite her age and weighing just 24 pounds, Charlotte faced many struggles in her young life, but she has been incredibly strong and brave through it all. 

In 2018, when Darah was pregnant with Charlotte, the couple had a feeling something wasn’t right with their baby. During a 20-week ultrasound, they received news that Charlotte had Dandy-Walker syndrome, a condition where certain parts of the brain are either missing, or not fully developed. 

Shortly after Charlotte was born, her doctors observed several markers for Down syndrome. After diagnostic testing, the results confirmed their precious daughter also had this genetic condition.  

“We were concerned about what a dual diagnosis would mean for our daughter,” said Darah. “However, throughout this arduous journey, our daughter has taught us valuable lessons about resilience, despite her inability to speak and her developmental delays. She has shown us the power of inner strength. And just when we believed we had reached the pinnacle of adversity, we encountered yet another heart-wrenching setback.”  

During their family vacation in Pensacola in July 2022, Darah noticed a large swollen lymph node underneath Charlotte’s neck. Darah felt a sense of uneasiness regarding the enlarged size of the swollen node. Other than that, Charlotte remained happy and showed no signs of distress or pain. 

Later that day, Darah noticed the swelling had spread to the other side of Charlotte’s neck. Being a nurse, she conducted a physical head-to-toe examination of her daughter. That’s when she noticed Charlotte had petechiae, which are tiny brownish-red spots resulting from bleeding under the skin. 

“Initially, our plan was to drive back to Slidell to see Charlotte’s pediatrician, but we decided to consult a doctor in Pensacola,” said Darah. “The doctor diagnosed Charlotte with strep throat. When the symptoms did not improve with antibiotics, we returned to the doctor’s office three days later. During a comprehensive exam, the doctor found multiple swollen lymph nodes in Charlotte’s groin and under her arms. Charlotte was referred to a hospital in Pensacola for lab tests, and when the results came back, they told us to go to the ER because Charlotte’s blood tests were abnormal.”  

On July 23, 2022, the Herefords were confronted with the heartbreaking news that no parents ever want to hear: their sweet 4-year-old Charlotte had been diagnosed with a form of leukemia. 

Acute lymphoblastic leukemia (ALL) is a type of cancer that affects the bone marrow and blood. It is characterized by the rapid production of abnormal white blood cells, known as lymphoblasts in the bone marrow. These immature cells do not function properly and crowd out health blood cells, leading to a decrease in the production of red blood cells, platelets and normal white blood cells. 

The physician in Pensacola contacted Dr. Zach LeBlanc, an oncologist at Children’s Hospital New Orleans, to discuss Charlotte’s situation and Dr. LeBlanc agreed to accept Charlotte as a patient.  Charlotte was transferred immediately by ambulance to Children’s Hospital to meet her care team. 

“We knew we were in for a tough road ahead,” said Darah. “We were very scared and completely devastated. The thought of whether Charlotte would make it through was always on our minds. It’s a brutal reality check when you find out your child has cancer. When we got to the hospital, it was like we gained a whole new family. The doctors, the nurses – everyone there became our family.”  

Charlotte’s treatment journey 

When Charlotte’s parents arrived at Children’s Hospital, they met with Dr. Justin Farge, who would serve as their daughter’s primary pediatric oncologist. During that meeting, Dr. Farge confirmed the diagnosis of ALL with a bone marrow biopsy and provided a detailed description of Charlotte’s treatment plan. She would undergo rigorous chemotherapy for the next two and a half years. 

“When treating patients with cancer, there’s no such thing as a one-size-fits-all approach,” said Dr. Farge. “We understand every patient and their family have unique needs, so we collaborate closely with them to develop a personalized and thorough care plan. In Charlotte’s case, we used a mix of different chemo agents to attack those cancer cells head-on that subsequently put her into remission. We strategically timed each drug based on the specific phase of treatment just in case the leukemia showed any resistance to a particular chemo drug. She tolerated the treatment well.” 

Charlotte began chemotherapy in July 2022. Throughout the initial phase known as induction, she spent one month in the hospital receiving IV chemo through a port in her chest. She also took oral steroids alongside her chemotherapy. Following her hospital stay, Charlotte continued her monthly chemo treatments on an outpatient basis at the oncology/hematology clinic at Children’s Hospital. 

“Charlotte did well during her treatments,” said Darah. “She experienced a few mood swings and increased appetite, which are common side effects of the steroids. Rodney and I tried to focus on the positive things. Charlotte’s natural response to everything was to just thrive and embrace life.”  

Demonstrating the resilience of a true warrior, Charlotte persevered through her chemotherapy treatments. She courageously endured rigorous chemotherapy sessions for the initial 10 months until she transitioned into the maintenance phase. She spent a total of 172 days at the hospital. 

Making progress 

Although Charlotte’s treatment plan will take a little over two years to complete, she has made incredible progress and overcame an unexpected hurdle. After the initial phase of treatment, doctors noticed cancer cells in her bone marrow, indicating that she had not achieved remission. Charlotte’s condition transitioned from standard risk, requiring minimal amounts of chemotherapy, to high risk, necessitating more intensive chemotherapy treatments. After making adjustments to her treatment plan, Charlotte has achieved remission. She is currently in the maintenance phase of therapy which involves taking chemo pills daily and receiving IV chemo and steroids every three months. Charlotte also undergoes regular assessments and monthly labs to monitor her progress. 
 
Today, Charlotte is doing well and eagerly awaiting her hair to grow back. She remains a joyful, affectionate little girl, bringing happiness to those around her. The Herefords are thankful to Children’s Hospital for the wonderful care and support they continue to provide to their family.  

“The oncology staff on that floor is truly special,” the Herefords expressed. “They not only cared for Charlotte’s medical needs but also nurtured and supported our entire family. They treated us like their own, showering Charlotte with love and meeting all our needs without hesitation. The nurses and nurse techs demonstrated remarkable care and dedication, showing compassion at every step. Dr. Farge and the oncology doctors were exceptional, and we were very fortunate to closely collaborate with nurse practitioners Olivia and Cody, who checked in with us often to make sure we were doing okay.” 

In offering words of encouragement to families facing similar challenges, the Herefords share their experiences. “The initial stages are undeniably difficult, but there is light ahead. Our unwavering faith played a role in our resilience during these tough times. Without our faith, holding onto any semblance of hope would have been impossible. Alongside the support we received from our family, we are grateful that we have a wonderful care team who is cheering our daughter on.” 

For more information about our Oncology and Hematology Program at Children’s Hospital New Orleans, visit our website: Hematology & Oncology | Children's Hospital New Orleans (chnola.org)