The second annual Journey to SCT Wellness 5K took place on Saturday, September 29 at Buddy Attick Park. The goal: to bring awareness of sickle cell trait (SCT), a condition that affects the lives of many, especially those of African descent. The race was organized by Brian and Camille Butler, a couple who started the nonprofit Journey to Happiness Movement Inc. in honor of their late daughter, Journey Bessai GyeNyame Butler.
Journey, they say, was a brilliant student, exceptional athlete and a wonderful daughter. Like many people her age she excelled at whatever she put her mind to. However, she also dealt with the complications that came with having the sickle cell trait. SCT can be inherited by a person with one normal gene and one sickle cell gene. When both parents carry the trait, children have a 50 percent chance of inheriting it and a 25 percent chance of inheriting sickle cell disease. The trait can be identified with a simple blood test. Journey experienced side pains near her kidneys, loss of weight and frequent urination. Her parents did not initially think much of it, as doctors told them that SCT was “nothing to worry about.”
In February 2016, Journey’s parents took her for an ultrasound to investigate her constant kidney pain. The results changed their lives. Journey was diagnosed with renal medullary carcinoma (RMC), a rare kidney cancer associated with SCT. The cancer tends to be aggressive and difficult to treat, and Journey learned she had a short amount of time left to live. Journey died five months later at the age of 13. Her father described the form of cancer as “a silent assassin,” leaving little to no time for him or his wife to try and prevent the disease from consuming their daughter.
Rather than dwelling on their loss, the Butlers decided to alert others about the dangers of SCT in the hopes that other children wouldn’t meet the same fate as Journey. This determination has kept them moving forward these months and years since Journey’s death. The Butlers are collaborating with Lois Rosado to help pass Maryland House Bill 1414, Sickle-Cell Trait Screening, Treatment, Education and Public Awareness. The bill (also called Journey’s Law) requires every child
with SCT and playing a sport to be screened via ultrasound of their kidneys. Early detection is key to treating and preventing sickle cell disease. As difficult as it has been to move on from their daughter’s death, the Butlers’ determination and energy to combat this disease shows their passion to make a difference. The 5K is another example of how the Butlers have brought people together in the hope of tackling SCT and RMC quickly.