A British woman has revealed she’s the only known person on Earth with a rare combination of conditions and says she lives each day in “fear of the unknown.”
As Zoe Castle lay on the operating table at just 13 months old, her parents hoped this would be the end to their living nightmare.
The care assistant was born with tetralogy of fallot, a rare defect which alters the structure of the heart.
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But despite the surgery being a success, it was just the beginning of a life-long battle.
Zoe started to display signs of hearing loss, lip reading rather than listening, and her corneas appeared brilliant white in the light.
After an intense investigation, it was found that she had DiGeorge Syndrome; a missing chromosome disorder.
Not only that, the 29-year-old has a mild learning disability, as well as scoliosis.
She’s the only known person in the world with this combination of conditions; and so has had to fight to find her place on Earth.
“Things that seem so simple for other people are much harder for me,” Zoe, from Gloucestershire, told Need To Know.
“Making friends has been difficult, as I miss parts of conversations and that makes me feel left out.
“I used to worry about job opportunities and whether employers would focus on my disabilities instead of what I could actually do.
“And it’s been difficult trying to adapt to a world that doesn’t seem like, at times, that it has a place for me.”
Zoe had already been dealing with difficulty breathing and fatigue post-surgery.
At four years old, it was clear that there were issues with her hearing, and, after the aforementioned investigation, it was confirmed that her sight would only ever be limited to light and dark, rather than colourful.
But she hasn’t let these struggles define her.
She said: “A lot of milestones took me longer, especially in school.
“I sometimes struggled to keep up because I couldn’t hear or see things properly.
“It was frustrating, as no one seemed to understand that I was trying my best.
“But, at the same time, I’ve become more resilient and patient.
“I’ve had to learn how to adapt, ask for support when I need it and work hard to overcome barriers.
“I think those experiences have shaped me into someone who’s determined and understanding other people’s challenges, too.”
Over the years, her eyesight has improved to the point where she was able to get her driving license aged 20.
She also uses hearing support, visual aids and accessibility settings on devices to help in her day-to-day.
If she’s tired or overwhelmed, it’s important for her to stay calm, and this includes avoiding drinking caffeinated drinks, such as cola.
To help come to terms with her conditions, and to offer support for people in a similar position, she’s penned a novel titled Between Heartbeats.
She said: “I wanted to create a story that honestly showed what it can feel like to grow up being different.
“I didn’t often see characters who reflected experiences like mine, so it gave me a chance to offer that.
“I also wanted readers to understand that behind medical conditions or disabilities, there’s still a person with ambitions, emotions, relationships and dreams.
“It’s helped me to realise, too, that the conditions are only part of me; not my whole story.”
Zoe is looking toward her future with strength and hope.
She added: “Living with these conditions means I’ll always have ongoing challenges and need medical monitoring.
“I’ve never really known a life without hospitals, operations and fear of uncertainty.
“But I don’t want it to define me completely.
“I try to navigate each day by focusing on what I can do, rather than what I can’t.
“For me, strength doesn’t mean pretending everything is fine – it’s more about continuing to move forward despite the challenges.”
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