Chelsea talks about being a voice for parents of children with a visible difference

Chelsea’s story: ‘Standing up for Eden and everyone with a visible difference’

Chelsea’s daughter Eden was born with a lymphatic malformation in the form of a mass on her face and neck.Chelsea holding her daughter, Eden, who has a lymphatic malformation

Three years, countless hospital visits and surgeries later, Eden has kept surprising doctors and defying the odds to become a perfect, happy and beautiful little girl.


This is the story of my daughter Eden Sue Jones. Before she was born, we were told there was a chance that Eden might not survive. That’s because, at 20 weeks into my pregnancy, she was diagnosed with a cystic hygroma – a fluid-filled sac that results from a blockage in the lymphatic system.

Doctors feared that the large cysts compressing her airways would potentially lead to fatal breathing problems at birth, and we were given the devastating news that Eden wouldn’t make it past the first day.

But at 12.01pm on August 9, 2016, miracle baby Eden defied all the odds and was delivered by C-section in a room full of doctors, paediatric surgeons and nurses. She was born with a lymphatic malformation in the form of a mass on her face and neck.

Three years, countless hospital visits and surgeries later, Eden has kept surprising doctors and defying the odds to become a perfect, happy and beautiful little girl.

Chelsea and her daughter Eden, who has a lymphatic malformation

Chelsea and her daughter Eden

Since Eden was born, I have become her advocate in a bid to help kick the stigma of her visible difference and disability. I often open up about our experiences of a visible difference and blog about the intimate, emotional and personal parts of our journey.

Despite being just three years old, Eden has unfortunately been subject to many nasty comments from trolls online about the way she looks. I will continue to be her voice by standing up for Eden and everyone with a visible difference.

She is beautiful inside and out!

If you’re a parent of a child with a visible difference and would like to blog about your experiences, we’d love you to share your story with us. 

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