When Simone was born her arrival was “much awaited and longed for” by parents Ella and Mario.

An alert baby, Simone reached many of her milestones and began talking from just 8 months of age – and apparently she has not stopped since. Ella remembers noticing a “worldly understanding in Simone’s eyes”, and noted how observant her daughter was of the world around her. Ella even took a video of Simone bouncing in her Jolly Jumper during her first year. But at around 10 months, Simone could not easily roll, she hadn’t yet begun to crawl and some physical skills, such as grasping cutlery, seemed to be regressing.

Certain these delays were more than Simone developing at her own pace, the Lionetti’s began the search for answers. They consulted with their GP and paediatrician before being referred to the RCH. It was at the hospital that they met Neurologist A/Prof Monique Ryan. “A blood test and a long week of waiting” preceded the diagnosis of spinal muscular atrophy (SMA), a chronic progressive muscular disorder which results in severe muscle weakness. Initially, it was feared that Simone had Type 1 SMA, the most severe form, with babies affected rarely reaching their second birthday.

“I used to wonder why she never played enthusiastically with her toys,” says Ella, admitting that Simone was showered with them in an attempt to motivate her. “It was only after we were given her diagnosis that it became clear why; she just never had the strength in her hands and arms to lift these things.”

RCH nurses are not only great carers, they’re also some of the hospital’s best researchers.

Conducting on-the-ground research to advance patient and family centred care, the RCH Nursing Research team work to cultivate a strong evidence-based practice and support enhanced clinical outcomes. RCH nurses have been responsible for important developments at the hospital, like establishing a procedural pain management program and optimising patient monitoring.

Thanks to generous RCH supporters, the RCH Nursing Research team are able to embark on more vigorous research to address the questions that arise through everyday practice. The team are also able to support an increasing number of nurses to further their professional education through PhD or Masters studies.

Through philanthropy, we’re helping RCH nurses advance great care and change the future of children’s health. Thank you.

Happy birthday to RCH patient and fundraiser Brady!

This amazing eight year old was born with club feet and has been treated at the hospital since he was just two weeks old to correct the position of his feet.

At a mere two weeks of age, Brady was in casts from his toes to upper thighs that needed to be changed every week for six weeks. At the end of this period, Brady underwent a tenotomy operation to lengthen his Achilles tendon and drop his heels down into the correct position. Then it was another three weeks in casts to ensure the tendon healed correctly.

“None of this was very pleasant for Brady, but he was a really easy baby and dealt with it all quite well,” says mum Leigh.

At two years old, Brady was diagnosed with Osteomyelitis, an infection of the bones in his feet. When antibiotics were unable to combat the infection, Brady underwent a bone debridement surgery to remove the infected bone and tissue from his foot.

In the years following, Brady was fitted for various orthoses to prevent his feet from rolling inwards at the ankle. Though Brady still needs additional surgeries to fully correct his condition, this avid basketball player doesn’t let it stop him from shooting hoops. He even claimed the spot of assistant basketball coach last year. “Brady loves basketball and he plays it most days. He was just certified as a para-athlete, which will help him continue pursuing sports.”

When Brady’s not on the court, he’s bringing smiles to the faces of other RCH patients. This year, Brady asked for donations to the hospital instead of birthday gifts. He is aiming to collect up to 150 presents for the hospital.

Thanks for your amazing contribution Brady!