Matt Schneider of Alpharetta is making a cross-country trek on his mobility scooter to raise awareness about the need for organ donations. CONTRIBUTED
Photo: Contributed
Photo: Contributed

Can this cross-country trek increase organ donations?

Earlier this month, Matt Schneider mounted his red mobility scooter and headed to East Roswell Park, where a group of friends had gathered to bid him Godspeed.

Schneider was about to set off from his home in Alpharetta on the second leg of what will be a 5,000-mile trek across country.

He was in good spirits as he directed his scooter onto a 29-mile stretch of sidewalk and headed north toward Acworth.

“I took Highway 92, mostly 4 lanes and all sidewalks, so it was a great ride,” he would say later that day in a blog post.

But at 42, Schneider has hardly had a great life.

He was born with Eagle-Barrett syndrome, a rare disorder also known as prune belly syndrome, so no one ever expected he’d even live this long. Statistics show that 20% of babies with the disorder die before birth, and 30% die from kidney problems within the first two years of life.

I guess you could say Matt is a lucky man. Even though he had no frontal abdominal muscles and his kidney function measured about 10 percent of capacity, he led a pretty normal life until, well, he turned 11 and the organs started to shut down completely.

Naturally, his parents and his younger brother Kevin got tested, and lo and behold all matched. On Aug. 26, 1987, his mother gave him one of her kidneys, and for seven years, Matt was just fine.

Then in his senior year at Chattahoochee High, the kidney started to fail.

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On Oct. 6, 1994, his father donated, and soon thereafter, Matt was toddling around Berry College, trying to figure out what he wanted to do with his life. He dabbled in pre-engineering at first, then changed his major three times before finally settling on broadcasting. Just about halfway through, his dad’s kidney started to fail, and Matt had to go on dialysis.

On Oct. 7, 1999, he got a third kidney from his brother.

It took him seven years, but in 2002, Matt finally graduated, earning a bachelor of arts degree from Berry. By then, he was determined to try to make a difference in the lives of people who needed organs. He volunteered with the Georgia Transplant Foundation, Children’s Healthcare of Atlanta, the National Kidney Foundation of Georgia, and Camp Independence for kids with transplants, where he was a camper for four years during his youth.

For the next 15 years, the kidney was running like a smooth machine, but by January 2015, it had given out, too. Matt went back on dialysis and, with no more family members he could count on for a kidney, added his name to the nation’s transplant list.

Thirteen months later, thank his lucky stars, he got the call for which he’d been waiting. Doctors at Piedmont Healthcare made the switch from a deceased donor, a perfect match, on Feb. 24, 2016.

He recalls the exact moment with the same precision he did the donations from his family members.

Matt Schneider, 42, who has Eagle-Barrett syndrome, has received four kidney transplants, most of them from family members. To help others, he wants to raise awareness about the need for more people to register as organ donors. CONTRIBUTED
Photo: The Atlanta Journal-Constitution

“They are like birthdays,” he said. “My life was saved four times. I will remember those dates for the rest of my life.”

He also wanted to do something for the 114,000 people in the U.S., including 100,000 who needed kidneys, waiting for an organ transplant.

By then, he was 40, but in addition to having been born with prune belly syndrome, Matt has scoliosis and both of his hips, dislocated, were in bad shape. Doctors can’t explain how he was able to walk in the first place, but for sure, it had gotten harder and harder, forcing Matt to put aside his pride and use a mobility scooter.

It’s a cute little contraption that looks like a motorcycle with two batteries, mirrors and blinking lights that make it road legal. With speeds up to 12 mph, it’ll cover 40 miles per battery charge.

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Well, that and his own troubles got Matt thinking about a cross-country trip to raise awareness about the need for organ donations and get as many potential donors as possible registered.

He figured he’d start April 1, the start of National Donate Life Month, in Miami and head west toward home. He set up a GoFundMe page and started blogging about his intentions at Scooting4Donors.com. Trikaroo donated a scooter. A friend volunteered to trail him in a support vehicle.

He completed the first leg of the trip 40 days later on May 10, traveling 1,200 miles (total) and registering 11 people to become organ donors.

It’s not a lot but it’s a start.

Each week, Gracie Bonds Staples will bring you a perspective on life in the Atlanta area. Life with Gracie runs online Tuesday, Thursday and alternating Fridays.
Photo: The Atlanta Journal-Constitution

“I’d love to get a thousand new donors,” he said. “I’m hoping the more miles I cover, the more people will hear about what I’m doing and sign up.”

We talked the day before he set out on the second leg, when he planned to scoot all the way to Dallas by July 6, then fly back to Atlanta to volunteer at Camp Independence.

His plans were cut short, however, for lack of funds.

In a June 12 post, Matt wrote: “Unfortunately, I will have to end Stage Two in Nashville. I still plan on finishing this trip, but (it) will have to be later this year.”

He told me days later that he planned to restart the trip on Aug. 1 after camp and he has all the funds he needs.

“I ended up doing 1,515 miles from Miami to Nashville and registered two more donors,” he said.

It’s an expensive undertaking, considering the cost of food and lodging, so he needs our help. Matt estimates he needs about $50,000, but anything he raises above that, he said, will go to Camp Independence, the Georgia Transplant Foundation and other transplant-related organizations.

Either way, he said, he intends to make it to California.

“The biggest reason I am doing this is I know a lot of people who have died while waiting for a transplant,” Matt said. “And while 95 percent of people agree with organ donation, only 58 percent are actually registered donors. I want to educate people and get them thinking about it. The more people register, the greater chance we will have to save lives.”

Find Gracie on Facebook (www.facebook.com/graciestaplesajc/) and Twitter (@GStaples_AJC) or email her at gstaples@ajc.com.

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