The “Break Every Chain” gospel singer and her husband Kenneth Leonard recently introduced fans to their son, Asher Amaris Leonard, in an interview with PEOPLE magazine. During their conversation, she opened up about the journey she and Kenneth had been on to have a child, which wasn’t the easiest. After years of trying and utilizing in vitro fertilization, the couple welcomed their miracle baby via adoption.
“After all of the disappointment, and it was many times that we tried and we were disappointed, but you have to have something internally that [sic] saying, I believe that this is what is meant for me,” she told the magazine. “So to have Asher now, and just the story behind how we got him, it is beyond what we could have imagined or expected. He is more than what we could have prayed for. So we are super excited just to watch him every day. Sometimes we look at him and say, ‘This is real?'”
Asher is eight months old. The couple’s adoption agency reportedly matched them with a mother who was a month away from giving birth. They were able to take Asher home soon after he was born, and they call their adoption experience a “beautiful” one. It made a huge difference after years of struggling with infertility.
“We were trying to kind of figure out which ways would make it work and throughout going throughout it, all of those ways ended up not working for us. And our faith was tested,” Kenneth told PEOPLE. “One of the things that I’m really happy for is that at the end of that process, our hearts were still open to God doing this, how He chose to do it. It really strengthened our faith. Looking back, God really kept his promise to us.”
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“If you desire a child, and you’ve been struggling, adoption has been beautiful for us,” Tasha says. “It’s literally like Asher is our blood.”
Despite admittedly having their faith shaken while Tasha awaited the opportunity to have her first child, the Grammy winner says that in the end, her faith was strengthened. She hopes people will be encouraged by her family’s experience.
“If you have faith for something, if you’re believing for something, don’t ever give up on it,” she says. “I know even in the last two or three years, it’s been hard to walk in faith because so many people have gone through so much. But we want our story to show, that even in the last two years, God is still working on the promises that he’s given us.”
Asher is the couple’s first child. Kenneth has three other children from a previous marriage. Tasha and Kenneth have been married since 2017.
Did you know that APOL1-mediated kidney disease (AMKD) is a serious genetic disease that impacts people of African ancestry? AMKD affects thousands of Black women and men, however, it’s not yet widely known or diagnosed in the United States. Therefore, we want to recognize AMKD Awareness Day, held annually on the last Tuesday of April. Now is the perfect time to learn more about AMKD, have open conversations about your health with your family and doctor, and seek additional testing resources, if needed.
“This disease has a huge impact on my daily life,” said Emani McConnell-Brent, an advocate and ambassador for the American Kidney Fund (AKF), currently living with AMKD. “I don’t feel like I have the luxury to operate in the world like an average 21-year-old.”
While kidney disease is often regarded as an older person’s disease, Emani’s story is unsurprising once you learn that AMKD can develop at a young age in otherwise healthy people and can advance faster than other kidney diseases.
Chronic kidney disease is often regarded as a “silent” disease as it typically has no noticeable symptoms until the kidneys have declined dramatically, often necessitating kidney dialysis and potentially, a kidney transplant.
In the U.S., there are clear disparities among those affected by kidney disease. “People of all races and backgrounds can have kidney disease,” says LaVarne Burton, president and CEO of AKF. “But people of color are more likely to be affected by kidney failure.” Kidney disease affects one in seven American adults, however, the prevalence of end-stage kidney disease (kidney failure) among Black people in the U.S. is over four times that of White people.
One cause for the higher prevalence in kidney failure among Black Americans is genetics—specifically changes in the APOL1 gene. Everyone has two copies of the APOL1 gene (one from each parent), but people of Western and Central African ancestry are more likely to have changes (variants or mutations) in their APOL1 gene that can cause AMKD. An estimated 13% of Black Americans have the two APOL1 gene variants (mutations) that are associated with AMKD. “Those who have variants in both copies of the APOL1 gene have a one-in-five chance of developing kidney disease, therefore, it’s critically important for people who are Black, Afro-Caribbean, African American or Hispanic/Latino to be aware of AMKD and have kidney health conversations with their doctor,” explains LaVarne.
What to Look For
If you have not been diagnosed with chronic kidney disease but have started noticing symptoms such as uncontrolled high blood pressure, swelling, fatigue, headaches, foamy urine, itchy skin, and/or muscle cramps, talk to your doctor about whether you should get tested for kidney disease.
“For those at risk for AMKD, there are steps that can be taken to promote kidney and general health, including regular visits with your doctor, maintaining a healthy eating plan, taking all medicines as prescribed, being active at least 30 minutes a day most days of week, and avoiding tobacco,” says Pranav Garimella, chief medical officer, American Kidney Fund.
It’s important to note that people with APOL1 gene variants that cause AMKD are not guaranteed to develop kidney disease. “They should be aware of the possibility, and discussing kidney health and symptoms with their doctor, given that AMKD generally progresses to kidney failure more rapidly than kidney disease caused by other factors,” says LaVarne.
AMKD can present in a variety of ways—including (but not limited to) focal segmental glomerular sclerosis (FSGS), hypertension (blood pressure)-associated kidney disease, HIV-associated nephropathy and lupus nephritis. So, people who have already been diagnosed with a form of chronic kidney disease may have AMKD without knowing it, and the only way to confirm is through a genetic test.
If you have already been diagnosed with kidney disease, talk to your doctor about whether getting a genetic test to learn if you have the APOL1 genetic variants is the right next step.
Emani’s Story
Emani’s symptoms first appeared at 17 years old. Emani started having unexplained symptoms, leading to collapsing, and her mother rushed her to the emergency department. “I experienced edema, chronic fatigue, proteinuria, and stomach pain. However, records show that my pediatric physicians noticed I had had protein in my urine since I was seven years old, but it was ignored and said to be caused by an unhealthy diet,” says Emani. “At the point of hospitalization, that major symptom had been ignored for 10 years.”
At the hospital, Emani was given a diagnosis of kidney disease, and the nephrologist mentioned several possible causes of it, including lupus. The experience was frightening and so anxiety-inducing that Emani opted for a biopsy right then and there. When the results came back, she was diagnosed with focal segmental glomerulosclerosis (FSGS), a form of AMKD. “At that point, I thought my family and I had received all the answers we needed, but almost a year and three medications later, nothing was working,” says Emani. “My nephrologist suggested genetic testing, and I was diagnosed with AMKD as the root cause of my FSGS.”
Receiving this diagnosis has made a huge impact on Emani’s daily life. “Before class, I have to check my blood pressure, eat breakfast, take medications, check my legs for swelling, and put on compression socks if needed,” says Emani. “It has forced me to be transparent about my diagnosis with friends. While it’s normal for them to want to go out and have fun, I simply don’t have the same amount of energy as them.”
Emani McConnell-Brent with her mother, Shaquita Brent
Power Forward Together
Powering forward means taking action—having open conversations with family and your health care team about your health, family history of kidney disease and learning whether you’re at risk for developing AMKD.
If you have kidney disease, genetic testing is the only way to know if you have AMKD and deciding whether to have a genetic test is a personal decision. Knowing if you have AMKD can help you and your doctor decide how best to manage your disease and take care of your kidneys. While there are currently no medicines to treat the root cause of AMKD, new potential treatments for AMKD are being studied, and you may be eligible to participate in that research.
That’s why the American Kidney Fund launched AMKD Awareness Day to increase recognition of AMKD and encourage people to become APOL1 Aware. “We want people to better understand how their genes can impact their kidney health, and share that knowledge,” says LaVarne.
If you have AMKD, you may be able to take part in a clinical trial.
“This could provide an opportunity for researchers to investigate treatments for AMKD,” Pranav said.
“My plan moving forward is to stay focused, stay positive, and share my journey as it unfolds,” says Emani. “My advice is to pay attention to what your body is telling you, no matter how old or young you are.”
