Life after sickle cell disease: A seven-year-old girl was cured of the disease thanks to her younger sister

Today is World Sickle Cell Anemia Day. International Awareness Day is observed yearly to increase public awareness and understanding of sickle cell disease and the challenges faced by patients, their families and caregivers. According to CDC, Sickle cell disease (SCD) affects roughly 100,000 people in the United States; over 90% are Black or non-Hispanic African Americans. The estimated life expectancy of individuals with SCD in the United States is greater than 20 years shorter than the expected average. Sickle cell disease is an inherited blood disorder that affects red blood cells. In individuals with sickle cell disease, red blood cells contain mainly hemoglobin S, an abnormal type of hemoglobin.

Sometimes these red blood cells grow to be sickle-shaped (crescent-shaped) and have difficulty passing through small blood vessels. When sickle cells block small blood vessels, less blood can reach that part of the body. Tissue that doesn’t receive normal blood flow eventually becomes damaged. However, in December 2023, the FDA approved a brand new treatment for sickle cell disease. The treatment known as Casgevy and is the first drug approved in the United States to use CRISPR, a gene-editing tool from Vertex Pharmaceuticals and CRISPR Therapeutics. In May 2024, a 12-year-old black boy, Kendric Cromer, suffered from debilitating pain sickle cell anemiabecame the first patient in the United States to undergo the newly approved gene therapy.

Sickle cell disease has no specific age and affects children like Cali Cole, who was born with the disease and was miraculously cured at the age of 4 with the help of her younger sister, who’s now 4. Kendra Cole shared with ESSENCE that her daughter Cali was born with sickle cell disease and received a bone marrow transplant on April 1, 2021, at the age of 4, which cured her of sickle cell disease thanks to stem cells from her 18-month-old child. -older sister Reign (whom I gave birth to after a year-long in vitro fertilization process). A family of five, Kendra, her husband, Lord Cole, and their three children (Cali, Reign, and Valor), have banded together to tackle the chronology of medical events surrounding sickle cell disease. In 2016, Kendra and Lord began family planning, knowing they wanted to expand their family. While planning their family, they decided to participate in genetic testing, during which Kendra learned that she had the sickle cell trait.

In 2017, their first child, Cali, was born, and the family medical team at ul Lurie Children’s HospitalIn Chicago, Illinois, I informed them that Cali had sickle cell disease, which had been diagnosed during newborn screening. From 2017 to 2021, Cali experienced the following complications due to sickle cell disease, which include: splenic sequestration, multiple pain crises, dactylitis, acute chest syndrome, extreme constipation, kidney damage, and abnormal TCD brain scan results. In late 2017, the Cole family frantically checked the Be the Match bone marrow registry for potential matches and didn’t find one, in order that they decided to try one other baby through in vitro fertilization to see if it is perhaps a compatible bone marrow match. In 2018, Kendra began the IVF process again, and in 2019, Reign was born. In 2021, the Cole family selected to pursue a bone marrow transplant through a stem cell donation from Reign. Although Reign and Valor don’t suffer from sickle cell anemia, they’re susceptible to the trait.

Although Cali is now three years post-transplant with none complications and resides a joyful, healthy, sickle cell-free life, her family remembers the toll that sickle cell disease took on all of them. We spoke with Kendra to understand the impact that sickle cell disease has had on her, her husband, and her children.

Gist: Can you discuss your experience as a caregiver?

Kendra Cole: There were many moments with ups and downs. You know, every parent who has a baby loves them with every fiber of their being. At the same time, I felt an enormous sense of guilt that I didn’t know my character trait. I often thought to myself. I feel there have been persistently during those first 4 years of her life that I felt like I was in a bit of survival mode. I would not allow myself to be completely defenseless in front of my daughter as her mother because I was really, really scared. But there have been so many days in the hospital where I had to placed on a brave face, stay calm and make difficult decisions in an emotional atmosphere.

How can we increase the number of sickle cell disease in our community?

Sickle cell disease is an inherited blood disorder, so it is not something you may see. And pain is usually subjective, right? So it’s painful for one person and should or will not be as painful for another person.

Can you mention the importance of gene therapy?

I was enthusiastic about many recent developments, especially gene therapy. Gene therapy represents an enormous advance in the treatment and potential for a cure for sickle cell disease, and there hasn’t been much movement on this issue in years.

How do you proceed to spread awareness?

I proceed to be energetic in my local chapter of the Illinois Sickle Cell Association, whether through a parent group or through our annual awareness walk. I also contacted several parents whose children want to undergo a bone marrow transplant. I connected with many families and easily offered them our story, support and connection.