"A fighter like you. Someone could benefit from your heart," Kyla Aquino tells an African American man stopping by the organ registry booth at a heath fair in Oak Park. Her charm disarms him and he changes his "no" to a "maybe."
Aquino, 33, a volunteer with Donate Life California, is a two-time kidney transplant recipient who has raised awareness about organ donations since she was 17. Her enormous smile melts hearts and breaks down barriers. Death is a difficult subject to talk about with strangers, she says, but she does is with grace. She makes a special effort to reach out to minorities where the need for organ donors is greatest.
"I have the courage to speak," Aquino says. "If I have the talents to convey the message, I've got to do my darndest."
What started as flu symptoms for Aquino at age 14 ended with kidney failure at 16. She received a kidney from her father, which was later rejected 6 years later by her body. She then received a kidney from her mother, Joy Aquino, shown below. She became an activist for the cause of organ donation early in life, writing a book at age 17 called "Kyla's Kidney Adventure." At 33 she is still fighting for the cause. "When you see a problem where the solution is so simple, you think why not get to the solution?" Aquino said.
Her mother said she raised her with this message in mind:"You're here for a purpose and if you're not helping you're in the way!" She's proud of her daughter's spirit of volunteerism. "She's really meant for it," she said.
August is Ethnic Minority Donation Month, stoking Aquino's fire to reach out to minorities. A variety of factors contribute to this shortage. According to Aquino and her mother, there is a cultural discomfort talking about death. "They think that if they prepare for death it will come sooner," said Joy. However, Kyla says that by making your decision about organ donation prior to death relieves pressure from family members who are already stressed. Also some cultures have a mistrust of the system and the government that leads them to reject sign up for organ donation. Getting out into the public like Aquino does helps reduce that mistrust. It gives people a chance to get to know them and their cause in a personal way.
Below is a piece written by Kyla Aquino about the issue:
Ethnic Minority Donors: Choose the Path of Heroes Over Fear
By Kyla Aquino
I never knew how lucky I was until I lost my friend, Sonja Archie - the single mother of a young daughter waiting for a life-saving heart and kidney transplant. During the six years Sonja held onto hope for a second chance , she spoke to her beloved church and African American community about the importance of organ donation. Because she needed two organs, her best chance for survival was to get a transplant from the same source. Getting a kidney from a friend or relative was not an option. She had no choice but to wait for someone to become a deceased donor.
In 2008, Sonja received a call from Sutter Memorial Hospital, telling her the news that we all wanted to hear: a heart and kidney donor was available for her. But when she arrived at the hospital, she was told the family of the donor had rescinded their decision to donate. This family had the chance to save eight lives through organ donation, but instead chose fear. Sonja went back home, hoping to get another call.
Just four months later, Sonja died, leaving behind her 8-year-old daughter, Precious.
As a two-time kidney transplant recipient, I consider myself very lucky. In my Filipino culture, discussing death and organ donation is taboo, though ironically a large number Filipino Americans work in health care. Knowing that many Asian and Pacific Islanders die waiting due to the shortage of organs, my parents opted to avoid the waiting list, and each donated a kidney to me. When I was 16, my father gave me a kidney and six years later, my mother gave me a kidney. If not for their lovingly heroic and generous efforts, I could have been among the nearly 21,000 other people on the California organ
donation waiting list today. Perhaps I could have been like Sonja; every day, 18 people die waiting.
African Americans, Asian and Pacific Islanders, and Hispanics are three times more likely than Caucasians to suffer from end-stage kidney disease, often as the result of high blood pressure and other conditions that can damage the kidneys. Unfortunately, ethnic minorities are also less likely to register to become an organ donor. Only one in four black families in the Sacramento area said yes to donation in 2010.
The fact is, those waiting for an organ transplant will have a better chance of receiving one if there are more donors from their racial or ethnic background. This is because compatible blood types and tissue markers--critical qualities for donor-recipient matching--are more likely to be found among members of the same ethnicity. With greater diversity of donors, we can increase access to transplantation for everyone.
August 1 is the first day of Minority Organ Donation Week, and I encourage people of all ethnicities to sign up to be an organ and tissue donors. You can do so either through the DMV when getting your driver's license, or online at: www.doanteLIFEcalifornia.org.
I hope you'll sign up today --- in honor of my brave friend Sonja.