Brave, brave, brave. 2 yr old Mac’s Mum finds him inspirational.
Brave little Mac Darby is just one of the tens of thousands of children that the Royal Children’s Hospital helps each year.
Mac, 2, who is never short of a cheeky grin, was diagnosed with neuroblastoma last February, becoming a regular visitor to the hospital.
Mac, 2, was diagnosed with neuroblastoma in February last year after an ultrasound found a 6.5cm long tumour in his adrenal gland.
It led to a series of cancer treatments and regular visits to the Royal Children’s Hospital. This week he will have final scans that his parents hope will give him the all-clear.
Mum Andrea Benton said that to hear good news would be an early birthday present for Mac, who turns three on April 30.
She said her son had been courageous through the whole ordeal.
“He had chemotherapy treatment before surgery to shrink the tumour to get it away from the vital organs,” Ms Benton said. “The doctors said it was like slicing chewing gum off a balloon. It’s been tough on him as there have been a lot of side effects from the treatment and we won’t see many of the impacts until later on in life,” she said.
She described his efforts as inspirational.
Click here to read the full story about Mac in the Herald Sun.
Words: Bridie Byrne
Pictures: David Smith
New Royal Children’s Hospital sets new benchmarks for design…
THE new Royal Children’s Hospital has won the prestigious honour of Australia’s infrastructure project of the year.
The Herald Sun reports: The 2012 National Infrastructure Award recognised the $1 billion hospital as a showcase for the nation when it came to its procurement, design and construction.
”This is a very proud moment for the Royal Children’s Hospital and for all Victorians,” Health Minister David Davis said yesterday evening.
”This $1billion tertiary hospital was delivered on time and budget, and features cutting-edge design incorporating state-of-the-art medical, research and educational technologies.”
He said every element of the project had set new benchmarks for a project of this scale and complexity.
Words: Lucie Van Den Berg, Herald Sun
Picture: Ian Currie, Herald Sun
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The generosity of the community that bridges the gap between government funding and the world-class standard of healthcare the hospital provides. Within our new world class facilities, we need to pursue ever-better outcomes for paediatric heath care. All donations are set aside and preserved for the purpose of medical excellence. Strict governance ensures funds are dispersed responsibly and where they are most effective. Read more about what we fund.
Nothing can prepare you for seeing your baby undergo a big operation — not even if you’re a firefighting dad who has braved burning buildings, or a mother who is a doctor.
Daniel Castley and Katharina Ebert were confronted with that scenario when their only child, William, needed surgery two weeks before his first birthday to reshape his skull and relieve pressure on his brain which had the potential to impair his growth.
“It hadn’t affected his development just yet but it would have caused slow speech, speech impediments and his ability to problem-solve would have been affected if the operation hadn’t gone through,” Mr Castley said.
The gravity of the situation was brought home when the couple were sent to the Royal Children’s Hospital in Melbourne.
“When we went down to the Royal Children’s Hospital the first time we were confronted with a team of 11 surgeons — plastic surgeons, cosmetic surgeons, neurosurgeons — the whole team was really there behind us right from the first time we went down there,” Mr Castley said.
Thankfully for Mr Castley, a firefighter with Albury Civic, and his wife Dr Ebert, who works at a Lavington clinic as a GP registrar, the eight-hour operation proved a success and William, now 18 months, is developing just like any other toddler.
Dr Ebert said her knowledge of medicine gave her some comfort, “but then again you regress into being a mother and a mother only and you worry about how your child will cope”.
“All you want to do is hold your baby and make him better,” she said.
Having seen the expertise of the Royal Children’s Hospital, the couple are urging Border residents to give to the Good Friday Appeal.
Since 2005 Mr Castley has collected donations with his workmates who ride fire trucks around Albury each Easter.
“At the start of 2005 … I wouldn’t have fathomed my chances of having a son at the hospital,” Mr Castley said.
“Now that he’s been through such a procedure it’s really a significant part of my life now and I will continue to raise money for the Good Friday Appeal.”
CFA, Fire and Rescue NSW, Rural Fire Service, SES and Volunteer Rescue Association will be collecting from 8am Friday across Albury and Wodonga.
They are aiming to surpass last year’s totals of $54,000 (Wodonga) and $40,000 (Albury).
Read the full story by Anthony Bunn in the Border Mail here.
Donate now to the Good Friday Appeal.
Picture: DAVID THORPE
A mother and daughter’s bond of love
Five-week-old Amelia Piper has the same devastating bone condition that crippled her mother before a remarkable recovery.
Jodie and her four-week-old daughter Amelia both have Larsen syndrome. Picture: Ben Swinnerton Herald Sun
Mother and daughter have Larsen’s syndrome, a rare inherited condition where joints are loose and unstable, causing dislocations and other problems.
Amelia is being treated at the Royal Children’s Hospital for a severe form of club feet and dislocated hips, mirroring Jodie Piper’s experiences from 30 years ago.
Mrs Piper, a veteran of more than 20 surgeries at the RCH, had her “flat” face, which had no chin, barely any cheekbones and not much to her nose, rebuilt.
“The only thing they haven’t changed is my eyes and my ears,” she said.
At her worst, Mrs Piper would dislocate a dozen joints a day, had multiple fractures and was riddled with arthritis.
Read the full story by Marianne Betts in the Herald Sun here.
Donate to the Good Friday Appeal.
Photo: Ben Swinnerton
Teenage health issues ‘hidden from GPs’
Health professionals are often failing to recognise complex health issues such as depression, obesity and smoking in teenagers, an adolescent health expert says.
Young people commonly visit their GP with respiratory illnesses including asthma, colds and viruses but neglect to mention underlying health issues, which they may not regard as problems, a University of Melbourne academic says.
Professor of Adolescent Health Susan Sawyer said many of these patients have multiple health issues around drug and alcohol use, risky sexual activity, domestic violence, bullying and obesity.
She said longer consultation times for teenagers should be supported by Medicare rebates to allow GPs to explore broader health issues experienced by adolescents.
She said one in 10 young people suffered from asthma and this presented an opportunity for doctors to address the respiratory complaint and other invisible health problems at the same time.
“Our health care system doesn’t support doctors spending the required time with young people to really be identifying these sorts of issues,” Prof Sawyer, who is also director of the Centre for Adolescent Health at Melbourne’s Royal Children’s Hospital, told AAP.
“We have the over-75 check, under four check, and indigenous health check that are Medicare-funded items that really allow the doctor to engage in a much more preventative focus.
“It is the adolescent population that is really missing out at the very time that many of these behaviours or states are emerging.
“My sense is that doctors recognise that broader role they have for adults but somehow they have failed to conceptualise that they have this same role for teenagers,” she said.
Prof Sawyer said an annual, Medicare-funded preventative health check for all age groups, but especially adolescents, could help reduce rates of diseases such as type 2 diabetes in adulthood.
Prof Sawyer appeared this week at the Thoracic Society of Australia and New Zealand Annual Scientific Meeting, a respiratory conference in Canberra.
Read the full story by Michelle Henderson on ninemsn.com.au here.
Multiple organ transplant gives Mohamed a second chance at life
At just 13 years old Mohamed El Shazly has become the first child to receive an intestinal transplant in a complex 10 hour surgery at The Royal Children’s Hospital.
Mohamed was born with Hirschsprung’s disease, which caused his intestines to fail when he was very young. He has been fed for over 8 years by an intravenous line while he waited for donor organs to be available.
The head of liver and intestinal transplantation at the RCH, Associate Professor Winita Hardikar, said Mohamed was ”a courageous, resilient boy”, who was recovering well, but had a challenging journey ahead in recovering from the marathon surgery.
The surgery, which required 20 doctors and surgeons, involved providing Mohamed with a new liver, small bowel, pancreas and duodenum.
The surgery has given Mohamed a second chance at life, and the doctors hope that the surgery will allow Mohamed to eat normally in the future.
This article was originally featured in The Age here
Words: Kate Hagan
Photo: Alvin Aquino
Good Friday Appeal :: Lucky Lilly
Little Lilly Chugg is lucky to be alive after a one-in-a-million condition caused her kidney failure and subsequent heart failure.
Within hours of seeing her GP with shortness of breath last month, the four-year-old Launceston girl was flown to the Royal Children’s Hospital in Melbourne, where she fought for her life.
Another day without seeing a doctor would have been fatal.
But Lilly is not out of the woods yet. She needs a kidney transplant.
Hopefully, a family member will be a compatible match but if not, she will go on the waiting list for a donor organ.
Her parents, Tamika Boulter and Conrad Chugg, were unaware she was dangerously ill until she struggled to breathe one day.
Lilly’s condition, called renal dysplasia, affects one in every 1000 children, but just one in a million develops kidney failure.
After a month in Melbourne Lilly is now back in Launceston. She requires daily dialysis, but is otherwise doing well.
“That’s the sad thing about kidney disease, you show no symptoms so you’re not able to detect it until the last stages.”
Ms Boulter praised Lilly’s father, who did not leave his daughter’s side while she was in hospital, always staying strong and optimistic.
Next week Lilly’s family will have tests to ascertain if anyone is a match to be a kidney donor. A kidney transplant will give her the best chance at a normal life.
Read the full story in The Mercury here.
Donate now to the Good Friday Appeal.
Photo: Chris Kidd
Good Friday Appeal :: Little indestructibles
We love this article in the Sunday Herald Sun by Brigid O’Connell.
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It’s as much a psychological and emotional injury as a physical one.
But the Royal Children’s Hospital Limb Deficiency Clinic has seen time after time that children who lose a leg, arm, hand or foot to injury or illness remarkably gain a go-getter spirit like they never had before.
It can be a relationship between a family and the clinic that stretches throughout entire childhoods and teenage years.
Prenatal scans are often the first sign that limbs haven’t developed in the womb, or they will need amputation soon after birth.
It’s there in the labour ward that clinic director Ian Torode reassures heartbroken parents that the dreams, hopes and expectations they had for their child’s future may need to be slightly tweaked, but not abandoned.
It’s a conversation he will also have with shellshocked parents in the labor ward when congenital abnormalities evaded prenatal ultrasounds and to those whose children need amputations because of bone cancer, infection or car accidents.
“Especially for kiddies who are born with a lower limb deficiency, the parents are devastated and start thinking that’s it for the child’s life,” Mr Torode said.
“My job is the explain that their child will walk, even if they need a prosthesis.
“They will have a normal life except they’ll be kicking the footy with an artificial leg.”
In addition to Mr Torode as orthopaedic surgeon, the clinic also boasts a prosthetist who measures and makes artificial limbs, a physiotherapist and occupation therapist.
The clinic’s strength is the way it keeps continually adapts the prosthetic limb to keep up with growth spurts, and the different hobbies and self-care needs of each child.
The perfect hand is sourced from overseas and tweaked so a toddler can grip a spoon and start to feed themselves.
That same child may go through 10 prosthetic arms - each slightly longer than the other - by the time they hit double figures.
And by the time they become a teenager and start getting interested in cricket, cycling, playing the violin or painting, the innovative side of a prosthetist’s work really shines as they create adaptive devises to help them follow their passions.
“It’s not a misery clinic,” Mr Torode said.
“These kiddies are high achievers, many of them. We had 12 kiddies from our clinic at Beijing (competing in the paralympics).
“They are go-getters. Parents need to understand these kiddies do have goals, they achieve goals and do things they weren’t ever going to do with normal feet.”
TED JOHNSON
JUST as other children were taking their first steps, the parents of Ted Johnson (top left) were agonising over the decision to amputate both his legs.
Prenatal scans failed to detect the rare congenital abnormality tibial hemimelia, in which the Horsham boy was born missing his skin, bone, knee and ankle.
Doctors assessed his development in the first 12 months, but it was soon clear removing both legs and replacing them with prosthetic ones would be Ted’s best chance of an independent life.
The two-year-old was fitted with his first “stumpies”, with tyre rubber soles, last year.
As soon they are on, Ted gets a certain look on his face. Half excitement, half concentration, he starts stomping his legs, dancing and twirling.
A plaster cast (left) was made this week to replace the one he has outgrown.
In six months Ted is expected to walk on knee-length prosthesis and progress to full length legs and feet.
“It’s not the life sentence you think it is at the beginning,” said mother Abbie Clark. “Nothing can stop him.”
FLYNN KENWORTHY
WHEN you’re a four-year-old boy, there is not a lot cooler than having your arm covered in spaceships.
Doctors have no idea why Flynn Kenworthy was born missing a forearm, but he isn’t fussed about scientific explanations.
With his prosthetic arm he calls “Stretch”, all Flynn cares about is that he can hang off monkey bars, swim and play soccer just like his mates.
The focus for Flynn at the Royal Children’s Hospital’s Limb Deficiency Clinic is ensuring he uses the prosthesis to improve his posture and body symmetry, especially when riding his beloved bike.
He has also been testing a “sleeve” that slips on to his prosthetic so he can hold a drum stick or knife.
“Flynn’s the one who has taught us he can work things out,” said mother Bronwyn.
“He’s taught us so much … nothing can stop him.”
JACOB MIBUS
Jacob was up and running only three months after his foot was severed by a ride-on lawn mower on Father’s Day four years ago.
“We thought it would be a matter of a few stitches because his whole foot was there and he was wriggling his toes,” said Ms Mibus.
“They said if they tried to save his foot he’d be in pain for the rest of his life and would need countless operations.
“Or if they amputated, he would be running by Christmas.”
And he was.
The Dunkeld boy, 10, was fitted with a prosthetic foot screwed to a knee-high fibreglass cast.
After a week of physiotherapy, Jacob was back running, kicking a footy and holding his own on the basketball court.
Read the full article in the Herald Sun here.
Donate now to the Good Friday Appeal.
Photos by Ben Swinnteron and Rob Leeson.
Good Friday Appeal :: Baby Alice’s miracle smile
Like many curious babies, Alice Green giggles when she sees herself in the mirror. But unlike most children, her reflection has been transformed.
The Aspendale Gardens six-month-old is one of one in every 600 Australian children born with a cleft lip and/or palate.
Thanks to recent surgery at the Royal Children’s Hospital, her congenital condition is now a thing of the past. A cleft occurs when the lip and/or the palate fail to fuse during gestation.
Her mother, Debra Green, said she could not be more proud of her daughter, who had a six-hour operation four weeks ago.
“It has been a tough month but she has been a brave little girl and she still loves to giggle,” Mrs Green said.
Herald Sun/CityLink Run for the Kids
Runners, joggers and walkers in yesterday’s Herald Sun/CityLink Run for the Kids helped raise a record $1.65 million for the Royal Children’s Hospital Good Friday Appeal.
Prams, wheelchairs and scooters joined 33,000 runners in the seventh annual run which has raised more than $6.7 million for the hospital since it began.
World cross-country champion Martin Dent was the fastest man on the 14.38km course, which took runners through the Domain Tunnel and over the Bolte Bridge.
Dent finished in 42 minutes and 20 seconds.
“It’s a wonderful event and a wonderful cause. I’ve got three kids myself,” he said.
The first woman across the line was Sophie Barker in 51:40.
Good Friday Appeal director Christine Unsworth was thrilled with the day.
“It’s absolutely sensational. It is really just a wonderful event that ticks all our boxes - it’s about families, it’s healthy, it’s outside in the lovely surrounds of Melbourne … it’s the best fun run in Melbourne,” she said.
Herald and Weekly Times managing director Peter Blunden said the event had become a permanent fixture on Melbourne’s events calendar.
“It is a fantastic sight to see what this great city does to get out here and support the ultimate cause,” Mr Blunden said.
“We are absolutely delighted to be involved.”
Many of the competitors were running in memory of a loved one or to support a child being treated at the hospital.
Travis and Ellen Pearson ran the 5.2km course with daughters Molly, 2, and five-week-old Adele in a pram.
“Friends of ours lost a baby last year so we do this now every year just to remember Lucy and her family,” Ms Pearson said.
The family was part of a team of 70 runners who were competing in memory of Lucy.
“I think we’ve raised as a team about $7000 so that’s all money going well-spent to the hospital,” Ms Pearson said.
A group of 26 schoolboys from Trinity College also completed the 5.2km course.
“Unfortunately, about a year ago one of our classmates died from cancer so we’re competing for him,” Michael Yapanis said.
“I think we’ve raised around $2000-$3000.”
Read the full article by Michelle Ainsworth in the Herald Sun.
Photo: Martin Dent wins the long course of this year’s Run for the Kids. Picture: Chris Scott Herald Sun
American Women’s Auxiliary to the Royal Children’s Hospital (AWA) | 17th Annual Golf Fundraising Event
For more than 80 years, the American Women’s Auxiliary have been working to make their motto come to fruition - “Making a difference in the lives of others”. Their AWA Golf event has been going strong for 17 years to help them reach their fundraising targets. Their latest Golf event was held on 23 March 2012 at Victoria Golf Course, the same prestigious course where the Australian Masters was held.
82 golfers teed off after a briefing from Andrew Taylor of the Victoria Golf Course and a heavy rain shower. As the golfers progressed around the 18 hole course, on-green incentives were available for purchase designed to bring everyone’s game closer to perfection and increase the donation tally. Miss a shot? Purchase a $10 ‘mulligan’ – i.e. a do-over. Look like a tricky hole? Pay to get a golf pro to take your shot for you at a hole of your choice. Everyone’s handicap was looking better by the end of the day!
In the evening, over 100 guests stayed on for a celebratory and fundraising dinner. Ann Marie Johnston, AWA President, gave an overview of the AWA and their work over the past 80+ years for the RCH. Sue Hunt, Executive Director of the RCH Foundation, gave a presentation highlighting the areas at the hospital that are supported by donated funds. Special guests included former AFL players Michael Tuck, Des Tuddenham and Ted Whitten Jr.
The funds AWA raises go towards supporting the Children’s Bioethics Centre. Dr Catherine Lees, from the Children’s Bioethics Centre, provided an overview of the important work it conducts providing support and assistance to health professionals and families faced with these ethically challenging issues and difficult decisions regarding their seriously ill children. Find out more about their fascinating and important work here.
Altogether the event raised a wonderful $25,000 to go towards assisting the Children’s Bioethics Centre, a wonderful result. Thanks to everyone involved.
Winners of the 17th Annual AWA Golf Tournament:
Boris Liberman, Nic Liberman, Ben Rozenes and Josh Liberman;
Second Place:
Joshua Dawson, Adam Grant, Andrew Johnston and Richard Cantwell
Third Place:
Scott Dawes, Marc Caltabiano, Stephen White and Kevin Potter
NAGA (second to last place):
John McVey, Blair Pollopson, Chris Quinn and Gary McGlynn
Nearest to the Pin on the 4th hole: Wally Futschik
Nearest to the Pin on the 14th hole: Damien Smith
Longest Drive:
• Male: Rohan Lane and Mike Deverux (tie)
• Female: Kate Merta
Straightest Drive:
• Male: Damien Smith
• Female: Anita Robson
Special thanks go to AWA sponsors - Kliger Wood, Alliance Environmental Consulting, Boeing, Caterpillar, Escape Travel Greensborough, Grace Removals, McDonalds, Specific Freight, Taco Bill and Trans World Travel.
It’s never too early to start teaching our kids
Some children come to school knowing their alphabet. They can count to 10, write their name, tell you their favourite book and are read to every night.
For other children, the first time they see a book is the day they start school. These children have to be shown that a book opens, and taught how to sit and hold it and how to turn the pages. Many will have to learn English while they’re learning to read.
As National Catholic Education Commission deputy chairman Brian Croke puts it: “Students start off school unequal; they don’t become unequal at school or through school. They might become more unequal through the sort of school they’re in, the resources of the school, but they’re starting school unequal. The real inequity happens before school.”
Pediatrician Frank Oberklaid, founding director of the Centre for Community Child Health at the Royal Children’s Hospital in Melbourne, puts it even more strongly: “If children are behind the eight ball when they start school, it’s too late,” he says.
“They spend the rest of their school years trying to catch up, and many never do. We know absolutely that learning starts at birth. The first five years before kids get to school are probably the most important years in terms of education. But we’re still having a debate about access and quality of childcare. It’s crazy.”
Oberklaid was one of the architects of the Australian Early Development Index, rolled out nationally in 2009. The AEDI, which will be conducted every three years by the federal government, assesses every child in their first year of school in five areas of development: physical health and wellbeing; social competence; emotional maturity; language and cognitive skills (school-based); communication skills and general knowledge. It starkly displays the communities housing children who are falling behind developmentally for their age when they start school.
Read the full article in The Australian, by Justine Ferrari.
Photo: Sacred Heart Primary School principal Dianne Blake with students Ringo Nyorwal, left, Chol Ring and Danny Ajak. Picture: Aaron Francis
