Published in the Michigan FrontPage 05/14/2008.

A hero or a heroine

If a hero or a heroine is defined as a person of extraordinary courage and strength, Ajai Shaw surely qualifies. Most ten-year-olds are not thought of in this way but Ajai faces challenges every day that most of us would be hard pressed to endure. And unlike many ten-year-olds, her biggest concern is not a new set of clothes, or the latest playstation video game: Ajai needs a new kidney.

When Ajai was five years old her mother took her to their family doctor for a routine checkup. The doctor did some bloodwork and a urine analysis and discovered that Ajai’s kidneys were damaged. Upon further examination she was diagnosed to have a condition known as focal segmental glomerulosclerosis (FSGS) which is a disease that affects kidney function by attacking the tiny units within the kidneys where blood is cleaned. FSGS is rare, severe and potentially fatal. NBA athletes Alonzo Mourning and Sean Eliot were also diagnosed with this disease.

Ajai was placed on expensive prescription medications totaling thousands of dollars a month in costs. Yet her condition continued to worsen.

Eventually she had to be hooked up to a dialysis machine and to withstand the gruesome daily 10- to 12-hour procedure of having her blood removed, purified and routed back into her body.

“Kidney disease, high blood pressure and diabetes are very prevalent in the African American community,” says Ajai’s mother, Simone Shaw, who is also a nurse. “And we should all make sure to get regular checkups so that we can detect any early warning signs that could indicate kidney disease. We need to be more aware and involved in the Black community with the importance of eating right, dieting, exercise and regular checkups.”

Healthy kidneys are crucial because our kidneys filter our blood and remove impurities. They regulate the amount of salt and water in the body. Our kidneys collect waste and excess fluids in our bodies and pass them out as urine.

They also produce hormones that help keep us healthy, including one that controls the production of red blood cells as well as others that are necessary for the absorption of vitamin D.[1]

According to information provided by the National Kidney Disease Education Program, the impact of kidney disease is disproportionate among African Americans and they are four times more likely than Caucasians to develop kidney failure. And while African Americans make up just 12 percent of the population, they account for 32 percent of people with kidney failure[2]. Also among new patients whose kidney failure was caused by high blood pressure, more than half (51.2 percent) are African American.

Many health experts concur that people usually are unaware that conditions like hypertension and diabetes can lead to kidney disease or that they can greatly reduce the risk by regularly checking their blood pressure and sugar levels and keeping them in the required range.

Since Ajai has developed a condition of permanent kidney failure, kidney transplantation is the only treatment option that will allow her to have the quality of life she had before her kidneys weakened. She has been on a kidney transplant waiting list since Dec. 19, 2007. And there are always far more patients in need of organs than there are donors to give and/or suitable matches. Even a successful transplant is not a cure. It is part of a continuing process of treatment that requires the patient to take expensive medicines for the rest of their life. [3]

Fortunately, Ajai’s parents are able to cover her with their health insurance yet even this is not enough to provide for all her spiraling expenses.

“It gets very frustrating at times,” says Simone.” I had to apply for SSI for her seven different times. And although I was initially told that we should get it, I’ve been turned down every time. And sometimes it’s hard to make it to work because I have to be here with Ajai. But the bills and the co-pays don’t stop. They just keep building up.”

There is always hope, though, and Simone has made plans to work with an organization called the Children Organ Transplant Association (COTA) in order to raise funds needed for post-operation costs as well as for both before and during the transplant.

Those wanting to make donations may do so at Credit Union One at an account for Ajai in her name. Checks/funds can be made out to her and sent to the Westland Branch at: 29450 W. Warren, Westland, MI. 48185, telephone 734-425-1520.

Steven Malik Shelton is a writer and journalist. He can be reached at: malikshelton19@aol.com

References
[1] Accessible online at: http://rarediseases.about.com/cs/glomerular/a/070403.htm
[2] Accessible online at: http://www.nkdep.nih.gov/news/releases/kidney_failure.htm
[3] Accessible online at: http://kidney.niddk.nih.gov/kudiseases/pubs/transplant