SIENNA Belle was not expected to make it past her first birthday. This past weekend, however, she celebrated her seventh.

Born with a congenital heart condition that doctors said would eventually claim her life, Sienna's mum Karen Beutel is relishing every moment with her daughter.

But the family still has a long road ahead of them.

Sienna needs a world-first procedure that includes four surgeries within the next two years, and even then there is no guarantee she will live.

Sienna Belle and mum Karen Beutel prepare for Sienna's life saving heart surgery.
Sienna Belle and mum Karen Beutel prepare for Sienna's life saving heart surgery. Kevin Farmer

The family is raising funds to help cover the cost, and their GoFundMe campaign "Saving Siennas Broken Heart" has already raised $2215 towards a $2500 target.

"Without it we probably won't have Sienna so we kind of have to give it a go," Ms Beutel said.

"Even though we were told she won't have a long life expectancy there is still no guarantee.

"At the moment if we don't try anything she will be on oxygen at home; she will slowly get bluer, more puffed and we sort of don't know how long we have got."

Sienna Belle and big brother Declan prepare for Sienna's life-saving heart surgery to giver her a chance at a normal life.
Sienna Belle and big brother Declan prepare for Sienna's life-saving heart surgery to giver her a chance at a normal life. Kevin Farmer

One of the most heart-breaking moments for the family came not long after she was born.

After undergoing heart surgery at 12 days old, doctors delivered bombshell news.

"Every day is a blessing with Sienna because she wasn't expected to last past Christmas when she was born," Ms Beutel said.

"(When she was born) we went for more testing and on Christmas Eve they said 'take her home and love her because it's going to be her first and last Christmas'."

Despite the adversity she has faced, Sienna Belle is like any other seven-year-old; she goes to school, she plays with her older brother Declan at home and ate almost her body weight in candy at her birthday party at the weekend.

Whizzing around on her bike in the living room, oozing energy, you would find it hard to believe that she doesn't have long left to live.

Ms Beutel summed up in one word her feelings about being able to throw her daughter a seventh birthday party.

Sienna Belle and mum Karen Beutel, who says every day is a blessing.
Sienna Belle and mum Karen Beutel, who says every day is a blessing. Kevin Farmer

"Lucky," she said.

"It hasn't been easy but you have to take each day as it comes. You can't just keep crying though because you've got to make the best of every day and give her the best chance that you can."

In their kitchen, proof of the articulate young girl Sienna is becoming covers the walls.

Among them are drawings from school, and even a few medals for throwing surprisingly.

Sienna even invented her own word: "infibian" - because infinity isn't enough, she said.

"I love you infibian" is a common phrase in the family home, and it's one they hope to hear from Sienna for years to come.


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