Press Room (Paediatrics)

2017  |  2016  |  2015  |  2014 2013

To be ill is human: why normalising illness would make it easier to cope with

Why are we so shocked when we, or someone we know, becomes ill? Why are many people scared of illness and unable to support their loved ones when illness strikes? And why do so many people still think “it won’t happen to me”?
These questions strike at the heart of our relationship between sickness and health and our reluctance to confront illness as part of our everyday lives.
Author: Dr Gill Hubbard, Reader in cancer care, University of Stirling; Prof Claire Wakefield, UNSW Sydney.
Originally appeared in The Conversation March 21, 2017.

The tragedy of Aviana

It’s the stuff of every parent’s nightmare: a rare genetic disorder means Bethan and Johnny’s perfect baby will be lucky to see her first birthday.
Aviana has spinal muscular atrophy type 1 (SMA1). Most babies with the rare genetic condition die before their first birthdays. The average life expectancy without treatment is nine months. There is no cure.
When I meet Aviana at the Sydney Children’s Hospital she drinks me in. She seems to inhale every detail.
“They are so captivating,” says Dr Michelle Farrar, a neurologist at the Sydney Children’s Hospital specialising in neuromuscular disorders.
The hospital treats four to six babies with the condition each year.
“It’s just so devastating,” says Dr Farrar. “They have normal thinking and intelligence. They can smile and talk, but they are progressively paralysed.”
Originally appeared in The Sydney Morning Herald March 12, 2017.

Talking Point: It shows promise, but cannabis is not yet a cure for all our ills

A PARENT tells me about watching helplessly as their infant daughter suffers, a frightened look on her face before her whole body stiffens and face turns purple. This process repeats again and again, day and night, every day. With each day, their daughter seems to lose her spark and her personality as brain development slows.
This is something that across Australia, thousands of families and people with severe epilepsy are dealing with 24 hours a day. In the clinic, I see many families experiencing this panic, desperately seeking a solution and asking for medicinal cannabis because they have heard it might help.
How do I respond to this parent?
The issue of safety often gets lost in the debate about medicinal cannabis. I would say to this parent that, while I understand their desperation, the number one principle that I use to guide my decision-making is safety — that is, do no harm. This is even more important when treating children.
Author: Dr John Lawson, Conjoint Senior Lecturer, UNSW Sydney.
Originally appeared in Mercury February 24, 2017.

Potts family hoping for clinical trial to cure Annabelle

The Potts family was thrown into disarray at the end of last year, when Annabelle was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on December 30.
DIPG is a highly aggressive brain tumor and the family was given the devastating news that Annabelle had only one to three months to live without treatment.
The family’s hope now rests in finding a clinical trial that will be suitable for Annabelle, and are looking to the Kid’s Cancer Centre, which has provided care to children and adolescents with cancer and blood diseases for more than 50 years.
Adam and his wife, Kathie, have been in contact with Dr Ziegler from UNSW.
Originally appeared in The Daily Advertiser February 24, 2017.

Indigenous student a shining example of the power of a mentor

The first Indigenous student accepted into UNSW Medicine’s Honours program intends to pay it forward by mentoring students starting their training to become doctors.
Working under UNSW Associate Professor Nadine Kasparian, one of UNSW’s 20 Rising Stars, [Ashley] Towney will study the impact of anxiety on mothers and their unborn child following fetal diagnosis of congenital heart disease.
Originally appeared in UNSW Newsroom February 22, 2017.

'I don't know how you cope with that': How Ciara beat the odds

"This is your new life," a stranger told Michaela Flanagan as she microwaved her dinner in the kitchen at the Sydney Children's Hospital.
When a child is diagnosed with an aggressive cancer, uncertainty becomes a parent's only constant.
The NSW government announced on Wednesday $11.6 million in funding for cancer research through the Cancer Institute NSW, including $1.3 million in grants to investigate new treatments for neuroblastoma, which accounts for one in six of all childhood cancer deaths.
The funding awarded to researchers at the Children's Cancer Institute at UNSW for neuroblastoma research includes grants to Dr Daniel Carter and Dr Pei Yan Liu who will test drugs targeting certain genes present in high-risk neuroblastomas that make them resistant to treatment.
A separate grant to Dr Orazio Vittorio will work on combining catachin, an antioxidant found in green tea with a sugar based compound, dextran, to target high levels of copper, which plays a key role in the progression and aggressiveness of neuroblastoma.
Originally appeared in Blue Mountains Gazette February 15, 2017.

Glow-in-the-dark creatures helping scientists identify toxic cells

Using glow-in-the-dark genes from animals to light up toxic cells, Sydney scientists have made advances against two of the cruellest diseases.
Biologists from the Children's Cancer Institute have honed a technique for tracking down leukemi a cells by inserting genes from fireflies to make them luminous.
Originally appeared in The Australian February 13, 2017.

Spinal muscular atrophy: New hope for Australian parents of SMA infants

Bethan and Johnny McElwee's daughter Aviana was just a few months old when a Darwin paediatrician queried the behaviour behind her nickname, Little Miss Froggy.
"Our paediatrician thought she might have a hip problem." But a hip scan came back clear.
It was a follow up blood test that revealed an anomaly in Aviana's genes — a rare and little-known disease that, at its most ruthless, will kill an infant before age two.
Called spinal muscular atrophy (SMA), the genetic disorder wastes away the nerves that control muscle movement, leading to progressive paralysis followed by weakness in breathing and swallowing.
Few parents know they are silent carriers of the recessive gene until symptoms like floppiness start to present in their children, and there is currently no routine testing of newborns for SMA in Australia.Yet it is the leading genetic cause of infant death, according to Michelle Farrar, a leading SMA expert and neurologist at Sydney Children's Hospital.
Originally appeared on ABC Radio Darwin January 29, 2017.

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