Isabelle Harrison using basketball platform to advocate for her brother and organ transplants

Isabelle Harrison didn’t have her own cellphone in high school and was often missing recruiting calls from college coaches. She dialed up her older brother, Daniel, on a landline and the following weekend he came back home to Nashville, Tennessee, to set her up with a line on his plan.

Having their cellphones together, even as Harrison moved on to Tennessee and later a successful WNBA career, was always a special bond they shared in a family of 12 children. It wasn’t until recently, more than a decade later, that Harrison set up her own plan. She still calls her older brother for questions or advice, and when she clicked the call icon next to his name in February, it was for a much larger request.

Harrison told Daniel, who was diagnosed with lupus at 13 years old, that she wanted to dedicate her second Athletes Unlimited season to finding him a kidney donor after waiting two years on the national donor list. Her cause is continuing into May, which is national Lupus Awareness Month, and the WNBA season with the Chicago Sky.

“It’s just been hard,” Harrison told Yahoo Sports, a deep sigh indicating the weight it holds on her family. “I want to be able to promote his story and bring awareness to lupus in general to let people know how chronic of a disease it is. [It’s] very prevalent in the African American community. All of my life, I’ve experienced this and seen it with my family, so I think I was put in a position to basically be telling his story and everyone else’s story.”

Lupus is a chronic autoimmune disease that can cause pain and inflammation in any part of the body, though it typically affects skin, joints, kidneys and the heart. Approximately 1.5 million Americans have a form of lupus and there are an estimated 16,000 new cases per year, according to the Lupus Foundation of America. The immune system attacks healthy tissue instead of fighting real infections, and it impacts every person differently.

For Daniel, 37, it’s been kidney failure, transplants and dialysis. He’s been on the national kidney transplant list for two years after a hiccup in the system delayed his entrance a year. Harrison, 29, described him as more of a private person, but this year she felt given the situation, she had a platform at Athletes Unlimited, which features an Athlete Cause donation program.

“I feel like I’ve never been able to drive a campaign behind it,” said Harrison, who played for the Lupus Foundation of America in each of her two AU seasons and will continue her advocacy in WNBA pregame and postgame interviews. “Now, I have. … Hopefully, this is the last year that he has to deal with not finding a donor.”

Daniel's lupus journey

Three of the 12 children born to Ida, a longtime nurse, and Dennis, a former NFL Pro Bowl defensive end, have been diagnosed with lupus. Lupus is a complex genetic illness that has no clear pattern of inheritance, but does tend to occur in families. An estimated 20 percent of people with lupus have a parent or sibling who has lupus or will develop it.

Their sister, Diane, has been officially diagnosed and has bad moments, but is overall healthy, Daniel said. Isabelle sat out the 2018 WNBA season with an undisclosed autoimmune condition.

Danielle, one of the oldest children, died that same year from lupus. Ninety percent of people living with lupus are women and it is two-to-three times more prevalent in women from racial and ethnic minority groups. Those women are also more likely to experience more serious complications and have higher mortality rates, per a 2014 study by the Michigan Lupus Epidemiology and Surveillance Program.

Daniel, the seventh-oldest, said he was diagnosed at 13 and a year after Danielle, who was there with him through the process. Their dad sent Daniel, a middle child, with his older brother David, the Indiana Pacers’ 2004 first-round draft pick, to the sporting goods store for new shoes. The employee helping Daniel noticed his ankles were heavily swollen.

“I’m not even paying attention to it,” Daniel told Yahoo Sports. “I’m 13. Why would I? And I was like, ‘No, I’m fine.’”

David was also concerned and immediately took Daniel to see their father at Vanderbilt University, where he was an assistant football coach. They went to the hospital and doctors ran tests, ultimately determining it was lupus. He said he was told he probably wouldn't be able to play sports since he might not be able to walk, and was treated with Cytoxan, a chemotherapy drug doctors often prescribed for severe lupus complications.

“Every kind of bad news you could possibly want, you hear at the age of 13,” said Daniel, who continued to play sports in high school.

The Cytoxan and infusion of extra fluids to dilute it because of his young age and size created scarring on his kidney, and by the age of 18, his kidneys started to fail. In December 2004, months after high school graduation, his mother, Ida, gave him a kidney. But within seven years that organ also failed, likely because of Daniel’s size or having too much protein in his system while still working out hard, he said.

“For most of my life, I have remembered his life as being sick,” said Isabelle, who is about eight years younger.

He went on dialysis and in 2015 received a deceased-donor kidney. He was able to work a normal job as retail manager at Joseph A. Bank in Indiana and met his now fiancée, Casey Cawthon.

“That was going great. I was living my best life,” Daniel said. “But living in this area of America there’s something called Ohio River Valley Disease.”

Histoplasmosis, often called Ohio River Valley Fever, is an infection caused by inhaling a fungus from the air or water and most people who contract it fight it off without an issue. Those with weakened immune systems, like Daniel, have a higher chance of complications from it. Daniel first went to doctors about it months before the COVID-19 pandemic in November 2019 and it wasn’t until June 2020 that he received the diagnosis.

“I had done every test,” Daniel said. “All kinds of tests. Blood work daily. X-rays. Everything. They couldn’t find out what was wrong. And by the time they had, my kidney had started to reject again because of the damage it had taken.”

His doctor, who was about to retire, decided during the ordeal to put him back on the transplant list. A year later, when Daniel came in for his annual visit, he asked about any progress and how long it usually takes on the list. The office told him he wasn’t on it.

“Come to find out, during COVID people quit departments, change, stuff like that,” he said. “My paperwork fell through the cracks [in] the nurse’s exact words. I never got put on the list when I was supposed to. So a year of time, which is a lot, never happened for me. I basically had to start right then and there. And there was nothing you can do. They can’t just magically give you the time. Essentially I was just told, sorry.”

Waiting for a kidney

Daniel has four-hour dialysis sessions three times a week to transport blood into an artificial kidney or filter to pull waste and excess fluid out of the blood since the body’s kidney cannot. In June, it will be two years since he started dialysis. The procedure can be draining. A common cold can cause lupus to flare up, causing swelling of the joints, lethargy and body pain.

“Later in life it’s gotten a little bit worse when it flares up,” Daniel said. “When I was younger, I mean, you’re young, you don’t feel anything. You just push through everything. And your brain is just like, oh, [it’s] just [from] having practice for three hours. That’s why I feel like this. It’s not anything else.”

Lupus impacts every facet of life for both the patient and caregiver. It takes, on average, six years to be properly diagnosed after noticing the first symptom, and many people face an incorrect diagnosis before learning they have lupus. Though it is widespread, awareness of the disease lags. In a 2019 Lupus Awareness Survey for the Lupus Foundation of America, 63% of Americans had never heard of lupus or know little about it beyond the name. Selena Gomez can only do so much.

Daniel has been on the organ donation list for two years now this month. The United Network for Organ Sharing (UNOS) manages the list nationwide and ensures deceased donor organs are distributed fairly. The average wait time is three to five years, though it varies depending on region of the country and can be far quicker or longer depending on factors.

Transplants from living donors are preferred, and those from family members who are genetically similar lessen the risk of the body rejecting the kidney. Daniel had pitched it to his family — without any pressure — a couple of years ago. His sister, Della, wanted to help and underwent all of the testing.

“She came back as a perfect match,” Daniel said. “It felt like God was saying, this is the move. Just something that rare, it doesn’t happen that often.”

Della had recently had a child, and her hormone levels were a little off, Daniel said. Doctors weren’t happy with the numbers they saw on the final of 10 tests donors have to undergo, and it was taken off the table as an option for now. He said they’re waiting to bring it up again until after she finishes her doctorate this year. His younger siblings all have young children and were concerned about if their child might need one. Harrison decided it was time to spread the net wider, and in doing so, a chance to possibly help other families like hers.

“Isabelle has my mom’s kind of heart,” Daniel said. “And raising 12 of us, you’ve got to have a big heart. It means the world to me.”

How organ donation works

The organ donation shortage is a decadeslong issue. There are more than 100,000 adults and children currently on the organ donor transplant list and 85% of those are awaiting kidneys, according to the Organ Procurement and Transplantation Network. Every 10 minutes another person is added to the list, and an average of 17 people die daily waiting, per the organization data.

One reason is economical and some have pitched allowing payment for organs, which has been outlawed since at least 1948. Another is that donors would have to take time off of work, which isn’t always an option for workers in the U.S. Time off to donate an organ is not covered by health insurance, though donors may be eligible for a form of sick leave. Living donations can also impact life insurance policies. There are others unaware of how easy it is to sign up.

For potential recipients, life carries on while waiting on the list, but the big moments are in a holding pattern. Daniel, who had to leave his job at Northwest Mutual because of his health, proposed in December and both he and Cawthon have very large families, necessitating a big wedding. The nieces and nephews on his side alone range from “just starting in college to just starting in life.” They are actively working to start a family, though it’s difficult, and are considering eloping and having their big wedding when it makes more sense.

“She wants me to enjoy it fully,” Daniel said. “God willing, we were hoping that this year was the year that a kidney came, and then we were going to try and plan something for next year.”

Harrison, who finished sixth on the AU leaderboard in her second season, will be physically closer to her brother after signing with the Sky in free agency. She said she wants to see her older brother happy and living a “normal” life.

“If it can help them to start his new chapter in his life, with both of his kidneys doing well, I would just feel like I did my part for my brother,” Harrison said.

As one of 44 athletes in AU, and with a league based on individual voices and promoting personal causes, Harrison felt it was a “perfect forum” to try and make the connections that would find him, and potentially others on the list, a kidney. In the WNBA, the seventh-year veteran has a growing platform as one of 10 on a league Player Marketing Agreement (PMA) that includes events such as WNBA All-Star weekend, where she can speak to the issue.

Daniel said he’s constantly reading about artificial organs and as a Black man with lupus, he has a rare story that can help others. His younger sister, the one who hopped on his phone plan when calling was the primary feature, hopes that with her platform and help, others will scroll their phones to read more on the lesser-known disease and organ donor programs that save lives.