Ypsilanti brothers to give heart talk at LIFE Walk/Run

• Gift of Life Michigan: 614 patients are waiting for an organ transplant
• 22 people die waiting for a transplant due to a shortage of donated organs
• Of 58 percent of people waiting on the national transplant list are people of color
• Organ, tissue donation rate in Wayne County is 25-30 percent

Stan Larkin lived without a heart for 555 days.

During that year and a half he waited for a heart transplant, he set a record for the longest time spent carrying a portable artificial heart in a backpack.

But he wasn’t waiting alone.

His brother, Dominique, a year younger, also was on the heart transplant list.

“It was difficult at first, but I was waiting with my brother at the same time, so I won’t say it was easy, but it did make it easier,” says Dominique, 24.

“It was helpful because I had someone else close to me who knew what I was going through,” adds Stan, 25.

At age 16, Stan collapsed one day after playing basketball. He soon discovered he had arrhythmogenic right ventricular dysplasia, a heart condition that weakens the ability to pump blood and increases the risk of cardiac arrest and death. When doctors suggested family members get tested, they learned Dominique also had the condition.

For over seven years they tried to go about their daily lives, but in 2014, both their hearts gave out.

“It didn’t really hit us until we ended up in the hospital together, both waiting on the hearts, and not being able to leave the hospital until we got the hearts,” Dominique says.

Dominique waited five months in the hospital until a donated heart became available in January 2015. Stan held out with his artificial heart a lot longer.

“Day to day,” Stan says, “I tried not think about it: If they call today, they call.’ If they don’t, I don’t want to be worried, like ‘are they going to call? Are they going to call?’ ”

But they did call, and Stan finally got off the wait list in May.

“Our lives have been saved by heart donors,” Dominique says.

The brothers, both Ypsilanti residents, will speak Saturday at the Life Walk/Run on Belle Isle to raise awareness about organ, tissue and bone marrow donation. The 19th annual event, sponsored by Gift of Life Minority Organ Tissue Transplant Education Program, includes a 5K and 10K walk and 10K run, and participants can sign up to be donors on the Michigan Organ Donor Registry.

The event also leads into National Minority Donor Awareness Week, which highlights the need for more organ and tissue donors in minority communities.

According to Gift of Life, 58 percent of people waiting on the national transplant list are people of color.

Remonia Chapman, Gift of Life MOTTEP program director, says one of the goals of the event is to sign up more Wayne County residents on the registry, since the donor rate is lower than neighboring counties.

“In the outlying counties, the donation rate might be 35-40 percent. In Wayne County, it’s like 25-30 percent,” she says. “As a result, we want to make sure we continue to increase awareness in communities where people see a strong need.”

At last year’s walk, Michigan Secretary of State Ruth Johnson announced that 54 percent of eligible donors had signed up on Michigan’s registry. Chapman says that’s much higher than previous years — registration has reached 56 percent in 2016 — but there’s still more work to be done.

As of July 1, the Gift of Life Michigan reports 3,614 patients are waiting for an organ transplant. Of those, 1,281 are African-American, 119 are Hispanic and 63 are of Middle Eastern descent.

Every day, 22 people die waiting for a transplant due to a shortage of donated organs, according to the U.S. Department of Health & Human Services.

One of those people was Chapman’s aunt, who needed a kidney transplant.

“Unfortunately, she did not receive one, and she is now deceased,” Chapman says. “It is very important to me that no one should have to die waiting on an organ transplant.”

Sommer Woods’ aunt was more fortunate. About 12 years ago, her kidney and liver started to fail. Wanting to avoid dialysis, she tried various treatments and holistic approaches until a year and a half ago, when she went on the organ donor wait list.

“It was scary going through the process, especially when you have a double organ transplant,” Woods says. But her family got the call last year that both organs were available. “It’s such a blessing that she came out on the other side and is doing well,” she says.

The experience is why Woods, director of external relations for the M-1 Rail (or QLine) in Detroit, is co-chairing this weekend’s walk. Felecia D. Henderson, Detroit News assistant managing editor, will serve as the event’s Honorary Angels for LIFE Walk/Run chair.

Woods says she wants to dispel the fears and falsehoods about the donation process.

“People say, ‘Don’t do that. If you’re not really dead, they’ll make sure you are to get your organs,’ ” she says. “It’s just crazy stuff people hear that are myths.”

She adds that there’s a need among minority communities to be better educated about health practices that can help save lives.

“People know about giving blood, but even with that, we still don’t understand it until we really need it,” Woods says. “You don’t know what a transfusion situation is until you need blood.”

The lack of education is why the Larkins are taking the stage this weekend. From the nine years they spent from diagnosis to transplants, Dominique says he and his brother learned a lot about the donor process and now want to educate others. But they’re also spending time on activities they waited so long to enjoy.

“My brother is fresh out of transplant, but already he’s back in the pool swimming and enjoying everyday life,” Dominique says.

As for his favorite thing to do with his new heart?

“I honestly have to say just walking,” he says. Specifically, going on nature walks with his 2-year-old son.

“It’s the small things we couldn’t do when we were in heart failure that we appreciate.”

ssteinberg@detroitnews.com

(313) 222-2156

Twitter: @Steph_Steinberg

Gift of Life MOTTEP Walk/Run

Cost: $35 for walkers; $40 for runners

Registration: Starts at 7 a.m. Saturday

Join the Michigan Organ Donor Registry at giftoflifemichigan.org.