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. If a machine was to break at the wrong time, my life could be at risk.” However, her family have put in place safeguards, with backups in place for the most critical machines - “and in some cases there’s a backup for the backup” - and this has enabled Eden to live life to the full. She runs her own business from home and also creates content, raising awareness online around her condition. But she has faced backlash after disclosing that she was going through fertility testing to find out whether she would be able to have children in the future - receiving comments like: “If you can’t look after yourself, how do you expect to look after a child?” Nevertheless, Eden is determined to shift perceptions around young disabled people like herself and help others understand that she has “the same wants and needs” as anyone else. So as Eden hosts a TikTok Live Q&A around her desire to become a parent in the future, what will the response be and how will she handle the trolls if they come out in force?
