She Hasn’t Eaten Anything for 4 Years, but She Says It’s the Reason She’s Alive

Savoring food has been replaced by a four-year journey devoid of traditional eating because of the challenges posed by Loeys-Dietz Syndrome. Celia Chartres-Aris grapples with the absence of everyday pleasures, from sharing pizza with friends to relishing hot chocolate on a winter day, all now elusive due to the constraints of her rare genetic condition.

Loeys-Dietz Syndrome, characterized by the weakening of connective tissue, casts a profound shadow over Celia’s life. Born with underdeveloped organs, muscles, and tendons, she faces a daily struggle against pain and the unpredictable nature of her condition.

College marked a turning point when debilitating stomach spasms led to her first feeding tube. And a subsequent diagnosis of gastroparesis made reliance on a feeding tube permanent.

"Being diagnosed felt like a weight had been lifted off. For the first time, I felt like there was light at the end of the tunnel. Now we knew what was wrong, we could work on getting me better and not trying to wonder why I kept getting worse," she said.

Living With Loeys-Dietz Syndrome

The diagnosis, while bittersweet, offered relief from uncertainty, allowing Celia Chartres-Aris to focus on her recovery. Now reliant on Total Parenteral Nutrition (TPN), a life-sustaining method, Celia has spent four years receiving essential nutrients without traditional eating or drinking.

“I haven't eaten anything for four years,” she explained. “Nothing, not even water or supplements, can enter my system other than through this combination of a drip and injections.”

Despite the challenges, Celia draws strength from the daily variations in her life. Some days force her back to bed within an hour, grappling with intense pain. Others provide moments to work from home and engage in activities she loves.

"Excuse me that bathroom is disabled only"
"Thank you, I know it is"

Disability can be visible or non-visible. You cannot judge based solely upon appearance. Same person, same disability. Just because you can’t see it doesn’t mean it isn’t there. @The_C_D_G #InvisibleDisability pic.twitter.com/RcvQm5mjby

— Celia Chartres-Aris (née Hensman) (@celia_hensman) October 1, 2021

However, each day comes to a halt at 4 pm. This is a crucial moment when she returns home to connect to her infusion-a lifeline vital for sustaining her failing immune system and organs.

Tethered to the infusion for 14 hours, Celia Chartres-Aris navigates a world where venturing outside becomes a near-impossible challenge. The unique manner in which Celia needs to nourish herself shapes every facet of her life, from holidays to work. The palpable burden, the extra planning, and the profound impact on social interactions underscore the unimaginable difficulty of a life where eating and drinking are distant memories.

Celia’s story embodies resilience and adaptation, a testament to her God-given strength in the face of adversity. Through it all, she stands as a beacon of strength, offering a glimpse into a life defined by unwavering perseverance and an unshakeable spirit. When her body fails to sustain her, the Lord does.

"Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved," Psalm 55:22.

Photo Courtesy: Youtube/Truly
Originally published on GodUpdates. Used with permission.