Often — and all too tragically — the biggest obstacle to keeping a sick family member alive isn't finding the right doctor or a miraculous cure to a rare condition. It's simply scraping together enough money to cover the treatment.
Such is the case with 34-year-old Rachel Phillips of Burlington. The former world-renowned ballerina has a rare genetic disorder called Ehlers-Danlos Syndrome (EDS), which periodically causes her windpipe to collapse and leaves her gasping for air. Eventually, her doctors say, Phillips will die if she's not treated.
Fortuitously, Phillips, who was profiled in an August 3 story in Seven Days, "Fletcher Allen Has a Candidate For Groundbreaking Windpipe Transplant," has found a doctor in Stockholm, Sweden who's agreed to perform an experimental surgery to save her life, one so new it's yet to be approved by the U.S. Food and Drug Administration. In a cutting-edge medical procedure known generally as "regenerative therapy.", the Italian thoracic surgeon, Dr. Paolo Macchiarini, will use stem cells taken from Rachel's own body to grow her a new trachea in a lab, then transplant it into her body. If it's successful — and all 11 previous surgeries have been — Phillips should live a completely normal life, without even requiring the drugs usually taken by transplant patients to prevent their bodies from rejecting the foreign organ.
Phillips only complication? She needs to raise more than $300,000 to cover her treatment and transportation. So, on Sunday, November 13, Rachel and her husband, Steven Phillips, are holding a walk-a-thon at the Chace Mill Building, at 1 Mill St., Burlington, to help raise money for the trip and treatment. Donations will be accepted at that time, or can be given online by clicking here.