Lion’s Heart!

Born with a rare genetic condition, two open-heart operations behind her and challenges most of us never see.

Zoë Castle has turned her remarkable journey into a story of hope for others.

At just 29, Zoë Castle has already faced more than her fair share of battles.

Born with 22q11.2 deletion syndrome, also known as DiGeorge syndrome, Zoë has undergone two open-heart operations for Tetralogy of Fallot. She is partially deaf and wears hearing aids, has scoliosis and a mild learning disability, and was partially sighted while growing up.

But there is something Zoë has refused to allow her diagnosis to determine — her future.

Today, she is a disability advocate, a part-time care assistant and a published author, using the experiences that once made her feel different to help other people realise they are not alone.

FINDING HER VOICE

Growing up with 22q11.2 deletion syndrome was not always easy.

The rare genetic condition is caused by a small missing section of chromosome 22 and can affect people in very different ways.

For Zoë, its effects have included her heart, hearing, eyesight, spine and learning.

Things that seemed to come naturally to other children could take her longer to master, and there were times when people underestimated what she might achieve.

Some of her challenges remain largely invisible. Hearing loss, fatigue, anxiety and a learning disability can make everyday life require considerably more energy than those around her might realise.

Yet those experiences have ultimately helped Zoë find something enormously powerful — her voice.

She now speaks openly about her life and raises awareness of 22q11.2 deletion syndrome, a condition that remains unfamiliar to many people.

And she has taken that mission one step further.

She has become an author.

BETWEEN HEARTBEATS

Zoë’s book, Between Heartbeats, was inspired by her own experiences of congenital heart disease and living with DiGeorge syndrome.

The story follows a teenage girl who, during surgery, finds herself travelling through a symbolic world inside her own heart.

As she moves through its chambers, she confronts fear, rejection and self-doubt before discovering acceptance — and the strength to continue fighting.

Behind the fantasy lies a deeply personal reason for writing it.

Growing up, Zoë rarely encountered stories featuring people whose lives resembled her own.

She wanted to change that.

Between Heartbeats was written so that people living with disabilities and long-term health conditions could see themselves represented — and be reminded that the difficulties they face do not have to determine what comes next.

MORE THAN A DIAGNOSIS

Zoë’s journey has taken her from a child struggling to understand why she was different to a woman using those very differences to help others.

Her message is a simple but important one: having a disability does not mean having less potential.

Sometimes the route is simply different.

Every operation, every difficulty and every occasion on which somebody underestimated her has become another chapter in a much bigger story.

And now Zoë is writing those chapters herself.

Through her advocacy and Between Heartbeats, she hopes to increase understanding of 22q11.2 deletion syndrome while helping people facing their own challenges feel less isolated.

A diagnosis may be part of Zoë Castle’s story.

It certainly isn’t the ending.

And with a heart that’s already been through so much, she’s using it to give hope to others.