Girl with extremely rare condition dreams of 'wonderland' garden

The family of a girl who lives with an extremely rare condition is hoping to build a safe “wonderland”.

Kelcie Brooks found out her daughter’s brain wasn’t fully forming in the womb due to a buildup of fluid in her head.

Two weeks after welcoming Winnie into the world on April 15, 2019, she underwent her first of four brain surgeries.

One operation saw a shunt – a thin tube – placed in the baby’s head to drain the fluid putting pressure on her brain.

After years of genetic tests and scans, Winnie was diagnosed with Coffin-Siris syndrome (CSS) at four years old.

The diagnosis was made after doctors detected a mutation of the ARID1A gene.

As of February 2025, just over 530 people are clinically registered with the condition according to the National Organisation of Rare Disorders.

CSS can impact a child’s mental and physical development to varying degrees.

Winnie requires a wheelchair and is in need of supervision, with her mum, Kelcie, as her full-time carer.

The now six-year-old is also “preverbal”. She understands what is being said but has a limited vocabulary.

Kelcie says the diagnosis gave the family an answer, but it didn’t change the way they love and care for Winnie.

She told STV News: “It was nice to have a name to put to it, before I didn’t have answer.

“The diagnosis hasn’t changed the treatment she is getting or how we treat her.

“We have found a Facebook community for other people with Coffin-Siris. I’ve managed to speak to other mums with children of a similar age.

“It didn’t change our life because she is still Winnie.”

The 36-year-old revealed life can be “hard” for her daughter, but the “very happy” six-year-old has taken everything in her stride.

“Winnie makes friends everywhere we go,” she told STV News.

“She always wants to say hello to people when we go out and give them a cuddle.

“She is sociable and loving.”

Kelcie has created a fundraiser in a bid to build a garden tailored to Winnie’s needs at their home in North Lanarkshire. The schoolgirl loves the outdoors, with a majority of her time spent crawling at the park and playing in the sand.

The mum is aiming to create a safe environment where her daughter can do all the things she loves close to home.

The family is aiming to create a safe place for Winnie to play. Supplied

“Winnie loves to be outside, it is her favourite thing,” the 36-year-old said.

“For me, as a mum, a garden will make life a lot easier. As she gets bigger, it can become harder to take her to the park because she can’t be put in a normal-sized swing anymore.

“To be able to open the back door to Winnie’s wonderland would be amazing.

“It would be safe for her as well because she doesn’t have a sense of danger.

“It would get used all year because Winnie loves going outside no matter what.”