LOST CHILD: Little baby Evelyn died after battling the rare 4q deletion syndrome.
LOST CHILD: Little baby Evelyn died after battling the rare 4q deletion syndrome. Contributed

Bundaberg baby taken too soon by rare condition

"SHE spoke with her eyes - it was just how she looked at you that made her special."

These are the memories a young mother will hold forever after losing her baby girl.

Chloe and Kalan Page's daughter Evelyn died on Sunday after fighting a rare syndrome all of her short life.

The 13-month-old was born with 4q deletion syndrome and a number of other medical conditions including heart and lung disease.

The syndrome is so rare Evelyn is believed to be the only baby ever born in Australia with it.

She was the youngest of Chloe and Kalan's three girls and the couple was told to prepare for the worst from the start.

Not a day passed where it wasn't a blessing to have the smiling bundle of joy in their lives.

Chloe described her as bright star who always fought even after her open heart surgery she pulled through with only a "warrior scar" showing the pain she had endured.

"Evelyn had the biggest smile and she was always smiling and watching," Chloe said.

 

EVELYN: Little baby Evelyn passed away after she was the only one in Australia with the 4q deletion syndrome. Photo Contributed
EVELYN: Little baby Evelyn passed away after she was the only one in Australia with the 4q deletion syndrome. Photo Contributed Contributed

"She had about six to seven surgeries and always bounced back."

The mother-of-three said she stayed by her daughter's side every step of the way, which sometimes meant putting the lives of other family members on hold.

"I lived in Brisbane for the first year with Evelyn's life," she said.

"It means I missed the milestones of the other girls but as a mum I wouldn't have it any other way."

Saturday was like no other for the family and Evelyn had her first trip to the beach, it was a big thing for the family who said she had spent most of her life in and out of hospital.

 

EVELYN: Little baby Evelyn passed away after she was the only one in Australia with the 4q deletion syndrome. Photo Contributed
EVELYN: Little baby Evelyn passed away after she was the only one in Australia with the 4q deletion syndrome. Photo Contributed Contributed

Sunday morning Chloe said she went to help her sister move house and had a gut feeling something wasn't right.

"I had to leave all of a sudden and half way home I got the call," she said.

Chloe's grandmother Lisa Senn said the fact she wasn't with Evelyn had broken her daughter.

"There were times when they thought they would lose her and they prepared themselves but she was doing so well - it wasn't expected," she said.

 

EVELYN: Little baby Evelyn passed away after she was the only one in Australia with the 4q deletion syndrome. Photo Contributed
EVELYN: Little baby Evelyn passed away after she was the only one in Australia with the 4q deletion syndrome. Photo Contributed Contributed

"Everything they have been through in the last year has been really tough.

"But they all just kept fighting."

Lisa said the medical expenses and time in Brisbane had taken a toll on the family, and hoped the community would be able to rally with support to send Evelyn off in a beautiful ceremony.

A GoFundMe account has been set up to help the family. If you are able to help go to To help support the family click here or phone Lisa on 0439 201 557.

What is 4q deletion Sydrome

4q deletion syndrome is a rare chromosomal disorder where a portion of the 4th chromosome long arm (4q) is deleted.

It is often associated with intellectual disability, craniofacial dysmorphism, rotated or low-set ears, cleft palate, micrognathia, congenital heart defects, craniofacial, skeletal and digital abnormalities and, occasionally, autism, behavioural disorders and developmental delay.



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