Defying The Odds: Sean Toth's Story

By Lauren Carpenter

Sean and some of his former football teammates from Warren

When Sean Toth was 5 months old, he started getting his teeth, but then they fell out because there were no roots. That was the first sign that something wasn’t right. There were others that followed. Doctors were at a loss, but didn’t think the outlook was good. Fiftyfour years and 346 surgeries later, Sean has completely defied those odds.

The near-Eastside Indianapolis resident spent years in and out of hospitals before doctors at the National Jewish Hospital in Denver formally diagnosed him. His disease is similar to Hereditary Dysnomial Neuropathy Type IV, a rare genetic disorder that usually begins in infancy and is characterized by an inability to feel pain and an inability to sweat. Sean also has an inability to fight infections. But his symptoms don’t completely fit that disease’s description, making what he does have an orphan disease, a rare disease that affects fewer than 200,000 people.

“There were a lot of trips to the doctor’s office and the emergency room,” said Sean’s mother, Marnee. “Sean couldn’t feel pain, so he would hurt himself and would need stitches. Unlike other children, he didn’t learn not to put his hand on a stove or lean on a hot car, because it didn’t hurt.”

When first diagnosed, not many people knew Sean had a disease because his disabilities were not visually noticeable. After so many surgeries over the years, often caused by infections that wouldn’t heal, most of Sean’s limbs have now been amputated and he is 80% blind. But that hasn’t stopped him from living his life to the fullest!

50th birthday celebration! With his mom and friends

Going Beyond Expectations Sean says he was the first person in a wheelchair to receive a letter in an Indiana high school sport – football. He has researched it and believes he is the first in the United States, as well. Sean was on the Warren Central football team as a manager but also got involved in the action one time when quarterback Jeff George threw a pass to Kipp Koonce.

“I got tackled out of bounds and got right back up … I was a legend then!” Sean says. “I got credited with an assisted tackle and I hold the state record for most tackles in a wheelchair!”

Despite his illness, the coaches expected Sean to make it to every practice, game, and event, and he did.

Sean is a big sports fanatic and has done sportswriting for Inspin.com, show prep for Jon Chelesnik at ESPN radio, and several jobs at KCAA radio.

National Activist In the 1990s, Sean became an activist. Having endured so much pain, he wanted to ensure that others had the tools to fight chronic conditions. Inspired by research into cannabis, he traveled the nation as a medical marijuana activist. At that time, Sean says he was the only medical marijuana activist in a wheelchair.

He spoke to thousands of people about the need to legalize medical marijuana. His campaigning took him to large events and many small rallies,

festivals, campuses, and more in states including nearby Michigan and Wisconsin. His activism efforts have been featured in High Times Magazine, USA Today, IndyStar, NUVO, and local cable access shows.

Sean and and his aide Adria Johnson at the State Fair

He also is an advocate for those with disabilities. Sean has spoken to students at local schools to share his story with others about living with disabilities. It’s his hope that those speeches helped young people understand his struggles and be kinder to those in the disability community.

“Well, it hasn’t all been bad and although I have had my challenges, I bet that there are a billion people who would trade their life for mine,” Sean said. “It’s not been dull and I think that I have done much more good than bad.”

Living as an Adult With Disabilities Sean was able to go to college at Vincennes University and live on his own for two years. Then, for 21 years, Sean lived independently in housing owned by the U.S. Department of Housing and Urban Development (HUD) with the help of home health aides. As the building’s first resident, he felt very comfortable there and loved spending time with his neighbors. He could live life like everyone else – keeping his refrigerator stocked, using the bathroom, heating up food in the microwave, taking a bath, and more. One of his favorite activities was hosting NFL Sunday parties each week during football season.

Sean and his aide Adria Johnson

Living there, he said he had many meaningful roles that made his life feel whole.

“I was the person everyone came to for a friendly ear, shoulder, even a mediation or tech support,” said the computer hobbyist. “I literally have hundreds of stories of those days and the people I met through living there.”

“Life was a constant struggle. But I was so proud of myself,” Sean said. “I knew my purpose and I was living the life that I was brought up to live.”

Sean now requires a lot of support and lives at home with his mother. He has to receive help for each and every task. Kim has been Sean’s nurse for 28 years and sees him throughout the week. TK, an 83-year-old man from Uganda, has been his aide each and every day for 17 years. Adria has been his homemaker for eight years and sees him three times a week. He says Adria is his rock, and respects her hard work as she has earned three degrees, works two jobs, and is an amateur fashion model, all while being a mom.

Sean connects with the world through his computer

Sean wants all three caretakers to be a part of his story as they play a huge part in his life. He also wants to thank the great medical professionals at Riley Hospital for Children and IU Health. He says his loyalty is the way he has maintained such great helpers.

“They all know that I am there for them as much as they are here for me.”

Sean is also thankful for his mom’s constant love and support, as she has been there for 342 of his 346 surgeries. She only missed those four because she had to travel to say goodbye to a close family member before their death. Sean says she has always been a great mom.

The last several years have been very hard on him, as he cannot enjoy life the way he used to and has to completely rely on his caretakers. Sean considers himself a people person and used to always surround himself with so many people. Now, he describes his loneliness as gut-wrenching.

The idea of relying on the government for healthcare weighs heavily on him, but he is very grateful for all of the help he receives. He wants those who do not have chronic diseases to know how people with rare diseases feel.

“We want to work, and we want to be a productive part of society,” Sean said. “It kills us to take up so many resources. I don’t feel that I have put nearly as much into the world as I take out.”

Sean and Marnee Toth

He also wants society to understand that no matter who you are, how much money you have, or even how careful you are, anyone can become disabled.

And despite all of these setbacks, Sean still tries to lead a productive life as much as he can. He has decided whatever he does in life he will be giving back to the world however he can. One way he is able to fulfill this desire is through his latest project: digitizing video tapes. Out of the 5,000 tapes he has bought, he has digitized more than 3,000 of them! Among them are hours of MTV broadcasts from when the channel actually showed “Digitizing tapes is something that everyone can benefit from. My tapes go around the world the first hour I drop them,” Sean said. “My favorite part is that my efforts will be making people happy long after I’m gone.”

He has also written several pieces for a book that he would love to put together for others to read someday.

Sean with former football teammates Kip and Jeff

Advice for Those in the Disability Community Sean has several pieces of advice for others living with disabilities. He encourages them to live as independently as possible and to never stop trying.

Also, he understands it can be hard to find good, reliable home staff and is thankful to have his team. He encourages others diagnosed with rare diseases to be patient with their helpers, spend time getting to know them, and even surprise them with a treat every once in a while. He also says to let your caretakers know you are there for them, as that makes a huge difference. Caretakers spend so much of their time being there for others, so he knows they need others to be there for them as well.

He also makes sure to listen to music every day and watch comedy to keep his spirits high. Sean believes in pet therapy and has had his current cat for 21 years!

Despite Sean’s mixed feelings about his future, he said he will never give up.

“I stick around for everyone who still wants me around and work very hard to keep me going,” Sean said. “I vowed to never abandon anyone.”

Every day, he beats the odds.