She Haven’t Eaten In 4 Years!

26-YEAR-OLD Celia wakes up at the same time every morning to unplug her Hickman line – a tube that runs directly into her heart. Four years ago, Celia’s digestive system shut down and she has been unable to eat or drink since, so the Hickman line delivers all her food, drink and medicine directly into her bloodstream. Running the feed for 14 hours from evening to morning every day, she has the remaining 10 hours “unplugged” to go about her life. Celia was born with an ultra rare condition called Loeys-Dietz syndrome (LDS) – a genetic disorder that affects the connective tissue throughout her body. Celia described to truly how it affects her day-to-day: “It causes a lot of chronic pain, it makes me incredibly tired and also I’m incredibly susceptible to various different illnesses. Many of my organs have now either not formed properly or started shutting down.” Because of the wide-ranging effects LDS has on the body, the average life expectancy for someone with the condition is 36 years – so Celia and her family have to live in the knowledge that “it could happen tomorrow, it could happen in five or six years, but it will happen out of the blue.” This is not lost on Celia’s dad, who also has LDS and from whom Celia inherited the condition: “I am the gift that keeps on giving, that’s the problem.” And while the support of her parents and her husband, James, crucially enable Celia to live her best life, only one in every 70 million people have the condition and very little is still known about it. Celia has dedicated her working life to advocacy for and on behalf of disabled people – campaigning and lobbying to ensure their rights are not forgotten – and hopes to bring more attention to super-rare conditions like LDS: “One of the reasons that they’re rare is because people don’t know about them. If you do meet somebody that has a rare condition… Ask questions, be insightful, be respectful and be kind.” And Celia’s parents could not be more proud of what she has achieved up to now: “She’s amazing, she gets up every day and she gets on with it. The fact that we’re sitting here talking about her is her greatest achievement.”