Rachel’s story was featured on this Vermont PBS episode of Emerging Science.
Read more about Rachel’s story. Rachel was a world class ballet dancer who performed with the Royal Ballet in London, the Kirov in Russia, and other major companies in the US and abroad. Complications from a rare connective tissue disorder called Ehlers-Danlos Syndrome have degraded her body. She suffers numerous painful and debilitating symptoms from this disorder. The most immediate concern is over 90% collapse of her airways, which require her to regrow her trachea using her own stem cells. She will have to travel overseas for this life-saving therapy at her own expense as the procedure is not currently approved in the United States and is not covered by health insurance. Learn more about Ehlers-Danlos Syndrome (EDS). This rare genetic disorder causes a variety of complications including some life threatening conditions. Until very recently little was known about this medical condition that can virtually paralyze its victims. Rachel’s case is the first known reported incident where EDS has caused significant pulmonary involvement to this degree, but many cases of EDS go undiagnosed. See videos highlighting some of Rachel’s dance career. This section offers some actual footage of Rachel’s former dance abilities before EDS began to destroy her body. She has faced difficult challenges before in her life. The year she auditioned for the Royal Ballet they had over 10,000 applicants from outside the UK for just one spot which Rachel was awarded. This remarkable professional once broke her back when a partner missed a catch in a performance but Rachel finished the dance regardless of the pain. We thought you might enjoy some of her past performances. Learn about Siena, a special service dog that can sense when Rachel’s oxygen levels fall too low. Siena is an adorable, brown Labradoodle with some amazing abilities. Far more than simply a companion to Rachel, Siena is trained to offer mobility stability for Rachel to help her walk. But Siena’s most unique characteristic is the ability to detect when Rachel’s oxygen saturation levels drop and alerts her or anyone around to increase O2 or other breathing support. See Siena’s picture and read more about this unique story.