I will be adding media stories and clips that I receive over the duration of the trip.
Power Player – Matt
March 11, 2019
Matt has been dealing with kidney disease for his entire life, all 42 years of it. It has not knocked him down but made him stronger. Matt was born with Eagle-Barrett’s Syndrome. When he was born, he had about 10% function of his kidneys. The first ten years of his life, he considered it “normal.” He went to school, played with friends, and fought with his brother. Only in between all of that he went to the hospital periodically to run tests. Finally, at 10-years-old, he was told that his kidneys were in complete failure.
Just before his 11th birthday, Matt was put on the transplant list and started dialysis. He was on hemodialysis 4 hours a day, three days a week during the summer so he wouldn’t miss any school. His mother ended up donating her kidney to him on August 26, 1987. Matt went back to school later that year and actually ended up finishing 5th grade with the rest of his class.
There were many changes for Matt in middle school, just like most people. Unfortunately, his also included all the side effects from transplant medication like overgrowth of hair, moon face, and weight gain. He had a pretty tough three years, but still did what he could now that he was feeling healthier. He even ran for student council and became treasurer.
During his 8th grade year, Matt and his family moved from Coral Springs, Florida where he grew up to Alpharetta, Georgia where his life changed forever. The first few weeks in Georgia Matt ended up in the hospital, but that was just what happened every now and then. This visit was different. After going to an adult hospital in Miami for the past six years, Mattended up at Children’s Healthcare of Atlanta. He realized he wasn’t the only kid with kidney problems or who received a transplant!
A few years after moving to Georgia Matt’s kidney began to fail, so before he had to go on dialysis again, his father donated a kidney on October 6, 1994. Matt was a senior in high school and was still able to graduate with his class. After graduating, Matt attended Berry College for seven years. It took seven years because four years after he started his second kidney failed, and he had to go back on hemodialysis for most of 1999. His brother eventually gave him a kidney on October 7, 1999. Matt ended up graduating from Berry in 2002.
Ever since Matt was 16-years-old, he has been involved in the Transplant Community in Atlanta. Since 1992, he has been a counselor at a camp for transplant children, he has participated in the Transplant Games of America, and he volunteers at various transplant-related foundations. He is now working on a project of his own.
In 2015 Matt had to go back on hemodialysis for 13 months. After a long wait, he received his fourth kidney transplant from an amazing angel donor on February 24, 2016. Since that last transplant, Matt has been planning Scooting4Donors, a cross country organ donor awareness campaign. Matt will be going from Miami, Florida to San Francisco, California on a mobility scooter to register as many people as he can to become organ donors. He begins his journey on April 1, 2019.
From American Kidney Fund
Scooting4Donors: Why my journey with kidney disease is taking me across the country
I have been made stronger by dealing with kidney disease for my entire life—all 42 years of it. I was born with Eagle-Barrett syndrome and only about 10% kidney function. I had a “normal” childhood for the first 10 years of my life—I went to school, played with friends and fought with my brother. Even with an occasional hospital visit for tests, kidney disease was never a big distraction from my life.
That all changed when we found out my kidneys were in complete failure when I was 10. Just before my 11th birthday, I was put on the transplant waiting list and started dialysis. I was on hemodialysis four hours a day, three days a week during the summer, so I wouldn’t miss any school, until my mother donated her kidney to me on August 26, 1987. It would be the first of four kidney transplants for me. Because of her donation, I was able to finish elementary school with the rest of my class.
Most kids go through many changes when they transition to middle school, but my changes also included the side effects from my transplant medicines—overgrowth of hair, moon face and weight gain. It was a rough three years, but I felt healthy enough to run for, win and serve as student council treasurer. My family moved from Florida to Georgia during 8th grade, and I became a patient at a children’s hospital in Atlanta. It was the first time I was in a children’s hospital and the first time I realized I was not the only kid living with kidney disease or a kidney transplant.
My first transplant began to fail during my senior year of high school. I received another transplant from my father, which allowed me to complete high school. Five years later and in the middle of college, I was back on dialysis and once again needing a kidney. This time, my brother’s lifesaving donation enabled me to graduate with a college degree. I received my fourth kidney transplant from a deceased donor in 2016.
Since I have been fortunate enough to receive the gift of life four times, I have been giving back to the amazing kidney community as much as I can. I volunteer at a camp for children with kidney disease and competed with Team Georgia and Team USA in the Transplant Games of America and the World Transplant Games. Inspired by my last transplant and the film, The Terry Fox Story—a true story about a man who ran across Canada after losing his leg to cancer—I decided to start a trip I am calling Scooting4Donors. The trip will take me, on my mobility scooter, across 14 states and 5,000 miles to raise awareness of organ donation and encourage others to register as organ donors.
I left my Scooting4Donors starting point of Miami on April 1. As I write this post now, I am in Hampton, Georgia, five weeks and over 1,000 miles into my Scooting4Donors trip. In these five weeks, I have already registered nine people who have committed to become lifesaving organ donors for others. I will finish my Scooting4Donors trip sometime in October in San Francisco. You can follow along with me on my website, which I will continue to update along the way.
Posted: May 9, 2019 | Author: Matt Schneider
Can this cross-country trek increase organ donations?
- Gracie Bonds Staples, The Atlanta Journal-Constitution
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.ADVERTISING
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.
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.
“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.
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.
“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.”