RCH Patient

Daisy’s winning the fight

Meet cheeky tot Daisy

Weeks before Daisy Sanderson was born, her parents’ world was torn apart when tumours were found in her heart and brain.

Mum Shelby Gentz said she was “very, very scared” when a routine ultrasound detected the tumours.

What came next was a heart-wrenching but, ultimately, simple decision.

“They said we could still go along with the pregnancy and take it how it comes, or not go through with the pregnancy,” Ms Gentz said.

“But I knew no matter what my child had, I was going to have my baby.

“That was the easiest decision of all.”

Daisy, now 1, has tuberous sclerosis, a rare genetic disease that causes benign tumours.

She was born early at 34 weeks, and it was “love at first sight” for Ms Gentz and Daisy’s dad, Ty Sanderson, from Mernda, in Melbourne’s north.

“Obviously, as soon as I gave birth to her I fell in love, and Ty did as well, absolutely,” Ms Gentz said.

But Ms Gentz barely had time to meet her baby before she was whisked away to the special care nursery.

Within hours of birth, Daisy began having suspected seizures.

The episodes were confirmed as severe epileptic seizures when she was just two weeks old.

“I was holding her and, usually, it’s just a lot of shaking, but in that moment, she was jolting,” Ms Gentz said.

“I went blank, and then I had to pass her off to Ty, and then I just completely broke down.

“It was horrible. There was just nothing they could do in that moment.”

Daisy was put on to anti-seizure medication from birth, but it had little effect.

“The seizures could happen up to 10 times a day, and the bigger she got the worse they were getting,” Ms Gentz said.

“It was her whole body jolting. I felt horrible because I knew that there was absolutely nothing I could do to make it stop.”

“It absolutely breaks your heart.”

As Daisy grew bigger and stronger, brain scans determined that a tumour in one particular part of her brain could be causing the seizures.

Doctors at the Royal Children’s Hospital raised the g possibility of brain surgery to fix the seizures – but it came with a terrifying catch.

“They prepared us that she would not have any feeling or movement in her left side, so she wouldn’t ever be able to use her left arm and hand or leg,” Ms Gentz said.

“They said it would be pretty much a miracle if she could actually use her left side.

“So, of course, that made us extremely nervous.

“When she went into surgery, we were thinking, ‘Have we done the right thing?’.

“But if we didn’t do this, she could suffer for the rest of her life with seizures, and she would deteriorate and not develop as a normal child.”

Despite the grim warnings, Daisy was able to defy the doctors’ predictions.

“It was only two or three days after her surgery and she started to move her left arm – that was amazing,” Ms Gentz said.

“She still has left-side weakness, but she’s determined and I know she’s going to be fine.”

And while the seizures have not completely vanished, they have dramatically reduced in severity and frequency – and Daisy is loving life as a cheeky tot.

“She’s just amazing,” Ms Gentz said.

“She’s the best thing that’s ever happened to me.

“She has taught me so much already in just over one year.

“She is my miracle.”

Written by Jen Kelly
Images by David Caird
Published in the Herald Sun 8th March 2024

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