Old soul. Welcoming and personable. Last week, when 17-year-old Stefon Stilwell led a Future Business Leaders of America meeting, the keynote speaker he had invited to speak to the organization described Stillwell as such.

Stilwell lives life to its fullest, when he’s not busy working as New  York state District 5 Vice President of the FBLA, he is looking toward his college opportunities (business management and civil engineering - hopefully at the University of Rochester, Columbia or RPI); he snowboards (he won gold medals in the Empire State Games in 2004 and 2007); he is on the Greenwich High School track team for discus and shot put; he has played on the tennis team and played baseball; and he is trying to become fluent in Spanish. Stilwell has accomplished more than most, and he’s done it all while having lipomyelomeningocele, a form of Spina Bifida.

Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. It occurs at the end of the first month of pregnancy, when the two sides of the embryo’s spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the embryo’s back. Tests are available to screen for the condition, however they are not 100 percent accurate.

When Tiffany Danaher was pregnant with Stefon, the first of her three children, there were no indications anything was wrong. All the tests came back fine, however upon Danaher’s emergency c-section it was discovered and within 24 hours Stilwell was undergoing surgery.

Over the years, he’s faced, and will continue to face, ongoing surgeries. His next is coming up near Thanksgiving.

Danaher noted that discovering Stefon had the condition upon birth was terrifying.

“It was so scary, I was 22 and I just didn’t know what to do.”

She noted that there wasn’t the easy access to information back then as there is now with the Internet. Joining the Spina Bifida Association was a major help, as are Family Weekends at the Double H Hole in the Woods Ranch they attend regularly. At these events, parents and children can get together, talk about doctors, new treatments and compare notes.

“Get as much information as possible,” said Danaher. “Don’t just take the first opinion given to you - do research and always second guess the doctors. It is all about the education.”

Danaher notes they’re lucky though, Stilwell is in the low percentage of people born with Spina Bifida (10 percent) that do not have Hydrocephalus, or water on the brain, which can cause various learning disabilities.

During his youth, Stefon had a difficult time adapting, and the children at school were not always kind since he was different and had a more difficult time walking than they did, Danaher noted. But she continued to believe that raising him with a can-do attitude, he would be able to do everything other children could do. As the years went on, Stefon developed the can-do view and he flourished.

When asked what he would tell to children who are facing a difficult time, Stefon said: “Be positive, the world isn’t as bad as it seems. Don’t think in terms of what you can and can’t do. Think outside the box to find out what works for you.”

It was this can-do attitude that got Stilwell onto the slopes to snowboard and take part in the Empire State Games. It is also this positive attitude that got him involved in the Future Business Leaders of America - the organization that “virtually consumes” his life. After taking an exam, campaigning and being elected for the role, Stefon took the FBLA officer position in July 2007. As District 5 Vice President, Stefon is in charge of Washington, Warren, Essex, Franklin, Clinton and Hamilton counties, he has also been overseeing District 4 (Capital District) recently. Within the next few weeks alone he has a number of presentations he will be giving throughout the area on the organization.