Kota and Thomas Brown knew their infant son, Lanxton, had had his fair share of illness in the first few months of his young life, but couldn’t understand why he seemed more susceptible to simple colds and fevers more so than other children of a similar age.
When Lanxton was nine-months-old, Kota took him to their pediatric office to have yet another cold and fever checked out. The Browns’ regular pediatrician was out that day so Lanxton was seen by Dr. Kirk Walker.
“Dr. Walker thought he heard a heart murmur and he asked if Lanxton had ever been tested for sickle cell disease,” said Kota.
Sickle cell disease is only passed down if both parents carry the sickle cell trait. While Kota knew that her husband Thomas was a carrier, she herself was of the belief that she wasn’t; however, a blood test ordered by Dr. Walker that day revealed that Lanxton did in fact have sickle cell disease.
The Browns discovered that Lanxton’s pediatricians may have known from the start that he had sickle cell anemia because it is included in newborn screenings. Lanxton’s screenings were never forwarded to the family’s pediatrician because of an apparent spelling error on his records, said Kota. Because she didn’t think she was a carrier, Kota never considered the possibility that Lanxton might have the disease.
“We were putting him in danger and didn’t even know it,” said Kota, admitting that she and Thomas have struggled with feelings of guilt over not having learned sooner what was wrong with their son.
Sickle cell disease is a blood disease that primarily affects those of African American and Hispanic descents in the United States. The Center for Disease Control (CDC) estimates that between 90,000 to 100,000 people in the U.S. have the disease, with it occurring in about 1 of every 500 African American births.
According to the CDC, sickle cell disease causes red blood cells to become hard and sticky. The cells take on a C-shaped similar to that of a “sickle,” which die early and cause a constant shortage of red blood cells. When a person doesn’t have enough red blood cells, they have a condition called anemia. Also, when the misshaped blood cells travel through a person’s small blood vessels, they can get stuck and clog the blood flow. Whenever this happens, it results in severe pain and organ damage and can cause serious infections.
Following Lanxton’s diagnosis, he was immediately placed on a regular regimen of antiobiotics, as well as chemotherapy treatment, all of which continue today more than four years later. Pain medications, including morphine, are a normal part of his young life.
Lanxton has the most severe form of sickle cell disease, known as Sickle Cell Anemia SS. He has been admitted to the hospital more than 30 times, sometimes for just a few days and other times for weeks, as the family has combated the effects of the disease. All the while, he has stayed a fighter, said Kota and Thomas.
“He is a true fighter. He’s a very strong kid,” said Kota.
Kota and Thomas themselves are both on disability and stay home with their son, whom they homeschool. Children with sickle cell disease tend to miss huge amounts of school, even more so than those undergoing treatment for cancer because the disease never goes away. There is no cure, only ways to maintain quality of life.
“It’s a struggle every day,” said Kota.
Kota said that the couple has never asked for help before, but because some of the treatments they want for Lanxton, such as massage therapy for the constant pain in his limbs, aren’t covered by insurance, they wanted to do something. The yard sale was a start. Kota has also started a blog on CaringBridge, and Thomas has set up a website named www.lanxtonsjourneyandsicklecell.org to share Lanxton’s story with the world.
“I want him to get the therapy he needs so he doesn’t have some of the complications that come with sickle cell disease,” said Kota.
Kota said that the money they raise from today’s yard sale will go toward paying for medical care and physical therapy not covered by insurance, as well as toward setting up a life insurance policy for their son. The couple also plans on donating 20 percent of their yard sale proceeds to the Sickle Cell Disease Association of America.
“Everything we do is for him,” said Kota of Lanxton.
Today’s yard sale will be held from 8 a.m. to 1 p.m. at McConnell Landing. There will be summer, fall and winter clothing, shoes and other items for sale. There will also be a lemonade stand and beef hotdogs for sale for $1 each.
Those who can’t make it out to the yard sale but want to contribute in some way may contact Kota Brown at email@example.com. Kota’s blog on CaringBridge can be accessed at www.caringbridge.org/visit/lanxtonsjourneyandsc.