26-YEAR-OLD Eden was born with a rare condition that affects roughly one in a million people. Ullrich congenital muscular dystrophy (UCMD) has weakened every muscle in Eden’s body over time and she relies on 24/7 support from a team of PAs to go about her everyday life.
On top of that, the condition has severely affected Eden’s breathing – so she relies on seven machines to keep her alive. From the ventilator rigged to Eden’s wheelchair which delivers oxygen through a mouthpiece, to a suction machine and a cough assist machine – with all the medical equipment on hand, Eden’s dad Rod describes their home as a “mini hospital.
” And Eden is acutely aware of how critically important her devices are, as she told Truly: “I can get really anxious thinking about how reliant I am on machines.