Feisty 3-Year-Old Battles Rare Disease Jinah Kim 9NEWS (KUSA Denver) Reporter July 21, 2004 HIGHLANDS RANCH, CO - Not too many 3-year-olds have titanium in their bodies. But little Sawyer Benson of Highlands Ranch was born with a rare disease called Jeune’s Syndrome. It's a form of dwarfism where the ribs are so small, unless titanium rods are implanted to expand them - the child would suffocate and die. "The rib cage is very narrow," Sawyer’s mom Melissa explains. "The ribs are very short and they don't grow correctly to let the lungs develop." On the outside, Sawyer looks like any other feisty, adorable 3-year-old. It's only when he takes off his shirt and see the titanium rods sticking out of his back - that you realize what he and his family has been through. "We started with surgeries when he was a year old," Melissa Benson said. "We found surgeons in Texas that do titanium rib expansion surgeries and we drove down to San Antonio with Sawyer." Sawyer has to have surgery every six months or so to expand the titanium rods as he grows. He has to have them completely replaced every few years. He'll go through this process until he stops growing. Melissa Benson founded an organization after realizing there was no support group or reference group available for those suffering from Jeune’s Syndrome. She contacted another non-profit, Guitars for Life, to ask how to raise funds. When the founder of Guitars for Life heard Sawyer's story, he immediately wanted to help. "She emailed me and she said, oh, can you help my child?" says Casey Morris. "And I was overwhelmed with emotion." Morris - whose organization puts on concerts to help organizations focused on rare diseases - contacted the Hard Rock Cafe in Downtown Denver. The restaurant agreed to help - and recently it put on a benefit concert to raise awareness for Jeune’s Syndrome. "Everyone has a purpose in life," Morris says. "My purpose is to help children with rare diseases who are overlooked. And I'm gonna do it through music." Read more our our kids' stories by clicking HERE.