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OUR WHY

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FUN- RAISING!

FUN- RAISING!

CELESTE’S STORY

Celeste and her parents were leading their usual life until one day she started coughing persistently. Her mother, Rachael, took her to the doctor to check for glandular fever, but they discovered a tightness in Celeste’s stomach, and an ultrasound was ordered. It revealed a significant mass on her right kidney, and she was rushed to the emergency department of the RCH. Further tests confirmed that Celeste had Wilms tumour, a type of kidney cancer, and she began a four-week course of chemotherapy to prepare for surgery.

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Ben, Celeste’s father, recalls how fast everything moved from diagnosis to surgery. Despite the shock and fear, Celeste’s positivity helped to keep them going. She even celebrated her fifth birthday, which fell shortly after her diagnosis, with a fairy party. Celeste documented her experience in a newspaper article and talked about it openly.

On the day of her surgery, Celeste remained upbeat and even played the ukulele with Captain Starlight, climbing over the waiting room couches. She listed the three foods she couldn’t wait to eat afterward: cookies, chocolate, and chocolate cookies. Her mother, Rachael, had them well stocked. However, when they were called into pre-op, the reality of the situation hit Celeste, and she cried in her mother’s arms.

But help is always available at The Royal Children’s Hospital, and a child life therapist appeared at Celeste’s bedside, making her laugh with a toy egg that popped out a green baby dinosaur when squeezed between her fingers. Ben promised his daughter that everything would be fine and whispered, “I love you, I’ll see you soon.” Rachael held Celeste’s hand as she was wheeled away for anesthesia, while Ben stayed back in the hospital bay with his daughter’s bag of toys.

In the theatre, the Paediatric Surgery department director, Michael Nightingale, and his team were ready to remove Celeste’s kidney and the tumour. Dr. Nightingale said the chemotherapy Celeste underwent would make the tumour easier to remove. Eventually, he stepped away from Celeste, removed his gloves, and reached for the phone to inform her parents that the surgery had gone well.

Dr. Nightingale said that while he was the one who made the call, it was a “team effort” to save Celeste. Celeste’s resilience and positivity throughout the whole ordeal have been a testament to her strength and courage. Her parents are proud of her, and they know that she will continue to shine brightly in whatever she chooses to do in life.

KAIAH’S STORY

The smiling toddler stands in a park at The Royal Children’s Hospital bobbing her head to the rock music she always asks her parents to play.

It’s a simple sight, but it means everything to parents Chantelle and Denis, who were told their dance-loving child had a condition so rare she was the only one in Australia, and so complex she would never walk or talk.

But here is 20-month-old Kaiah, laughing as she stands on her own two feet and signs to her parents outside the hospital that saved her life.

Even before Kaiah was born her parents knew she had a battle ahead.

Chantelle said after her waters broke at 17 weeks it was “touch and go” until Kaiah was delivered at 36 weeks, with doctors warning her daughter’s airways may not be strong enough to survive her birth and the “intense” surgery ahead.

Kaiah is one of about 60 known children worldwide born with a syndrome that causes breathing and feeding issues called cerebrocostomandibular syndrome.

Ms Colafella said Kaiah had a small jaw that would never grow – she faces up to 10 repeat surgeries to adjust it as she gets older. Her rib cage is missing ribs, while those she does have are “in pieces”.

“We came over here (to the RCH) when she was six days old and we were in for three months,” she said.

But thanks to an incredible team of workers – from doctors and nurses to the physiotherapist who convinced Chantelle it was OK to hold Kaiah – their daughter is now “flourishing” at home, with her parents trained to care for her tracheostomy.

She said they “couldn’t be prouder of this kid” who communicates via “baby sign language” known as “quick sign” as the tracheostomy required to help her breathe prevents her from speaking.

“We didn’t think we’d get here but here we are,” Chantelle said. “She’s holding my hand and walking and doing everything they said she wouldn’t do.”

When asked what the hospital and Good Friday Appeal meant to their family, she couldn’t hide the tears.

“We’re just so grateful and humbled,” she said.

“Those ventilators are so expensive … and we got sent home with two. If it wasn’t for the hospital, she wouldn’t be here. End of story.”

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