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Care for Kids NEWS

Ruby’s Heroic Journey Ruby, two years, neuroblastoma

Since Ruby was diagnosed at only two years of age with neuroblastoma, an aggressive cancer forming in nerve tissue, she has had to endure many challenges. Staff and volunteers of the Children’s Health Foundation have been inspired by Ruby’s strength and passion for life. After the initial shock of her diagnosis, Ruby had another battle to fight against myoclonus, a rare condition that attacks healthy cells, just a month after having her tumour removed. Thankfully, steroid treatment was able to control this condition fairly quickly. Little Ruby was to face more challenges when, at the age of three, doctors found

a quick growing tumour on the lymph nodes between Ruby’s kidney and spine, requiring aggressive treatment. Ruby’s parents, Tracey and David, were her strongest supporters throughout the ordeal and are a great example of where Ruby draws her strength. Ruby’s older sister, four-year-old Armani, was also there for Ruby travelling from Biloela to Brisbane with the family before returning to stay with her grandmother to finish her prep year at school. It was hard for big sister Armani, who didn’t understand all the attention Ruby was getting or what was happening. The extended family were very supportive and involved with helping Ruby and Armani. “This has been a journey for the whole family as it affects the extended family as well,” Tracey said, “I can’t imagine what it would be like to have gone through this without them.” In just one and a half years of treatment Ruby has stayed strong, undergoing six

rounds of chemotherapy and surgery that succeeded in reducing the tumour by 95%. She also had a stem cell transplant using her own stem cells after spending eight weeks in isolation. “We nearly lost her at one stage,” Tracey said. “She was septic, her bowels shut down and there was a bug in her blood. She spent one night in the ICU. Ruby has coped remarkably well, although she has gone through periods of being angry, moody and depressed,” said Tracey. “It’s so hard to see a three-year-old depressed.” The procedures that Ruby underwent would be difficult for an adult, let alone a toddler. “There were big things that helped, like the doctors and nurses who were so kind and gentle,” said Tracey. “When she had her MIBG (nuclear scans), she had to be strapped in and was Continued on page 2

1300 SICK KIDS (1300 7425 5437) | www.childrenshealthfoundation.com.au

Photo courtesy of The Courier Mail

Children’s Health Foundation Newsletter Edition One 2013


Continued from page 1 hysterical, one of the technicians gained her trust and she was fine and would lie there still and calm.”

Reason to Smile During her time at the Royal Children’s Hospital, Ruby became involved in a couple of different projects to make her time in hospital easier and more enjoyable.

Ruby will continue to have checkups every three months for the next three years, and will need to be in remission for five years before she is given the all clear.

Ruby loved being part of Bravery Beads, a program that rewards children in hospital with a different bead for each obstacle they overcome. Each bead is a major milestone, unique to a procedure or stage of their treatment and each child’s ‘bead story’ is unique. They can compare their ‘bead story’ with other children in hospital and share with family and friends.

“We will do whatever it takes to get her well,” Tracey said. “We just want to get back to normal. This has become normal, surreal and we want to get back to life.”

Another program that helped to make Ruby’s time in hospital a little easier was music therapy, which she began in August 2011 while undergoing her stem cell transplant.

Ruby is just one of many children whose strength and perseverance are an inspiration to others.

The beginning of her transplant therapy went well until Ruby became very ill and agitated with the chemotherapy. The Head of Music Therapy, Maggie Leung came to visit her.

Thankfully, Ruby is now at home with her family in Biloela, returning to Brisbane for regular checkups.

Kids like Ruby and their families are grateful for your support, which helps to make their stay in hospital a little easier, and truly does make a difference.

Donor SUPPORT

“Maggie would come and play her guitar, and Ruby would relax, listen to her and go off to sleep,” said Tracey.

her music therapy CD so that they could darken the room and play the music for Ruby. “Again, she would just relax and go to sleep,” Ruby’s Bravery Beads Tracey said, “it really made a huge difference to her mental state and took her mind off her pain and being so unwell.” Ruby began to recover and Maggie was able to visit and play musical games. “Music therapy just calmed things down,” Tracey said, “it even relaxed us! The instruments were very calming and the whole program is definitely worthwhile and makes such a difference. “It also gave Ruby fun interaction with the therapists and someone to play with. It kept her upbeat, interested and stimulated. It was something that was fun.”

Even when Ruby was incredibly ill and didn’t want to see anyone, Maggie gave the family

Music therapy and Bravery Beads are just some of the programs that your support helps to keep running, making a real difference to kids in hospital and their families.

Since 2004, this amazing group of ladies have produced over 3,300 quilts, over 890 toys and more than 1,860 other items.

to the strength they provide to the local community through putting service before self.

Their work has provided great comfort and strength to little patients, with one child now using his quilt to do his push-ups on, all the way across the world in Spain. This young man still keeps in touch with the ladies, and is living out his dream of playing international soccer in Spain and Portugal whilst receiving his education.

Hazel Trace has made more than 1,000 quilts; Pat Snow has knitted over 300 ducks for premature babies, despite being vision impaired and knits the bodies by memory; Dawn Mora has knitted over 200 clown dolls.

Knitting Wonders The Children’s Health Foundation is grateful to have the support of community groups such as Sewsmart, a group of quilters led by Mrs Marjorie Bowers who have supported the Foundation with in-kind donations since 2004. These hardworking ladies produce handmade creations each month for sick kids at the Royal Children’s Hospital, from quilts and gift bags, to dolls, dress up sets, toys and knee rugs. After their inception in 1985 knitting for the Salvos, Marjorie and her group were featured on Channel 9, attracting more volunteers and boosting the group to 30 ladies.

Six of the ladies were rewarded for their work in the community by receiving the Australia Day Lilley Award, paying tribute

The Children’s Health Foundation is thankful to Sewsmart for their continued support in helping to make the lives of sick kids and their families a little easier.

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Photo courtesy of The Courier Mail

Care for Kids NEWS


“Bug Detectives” Breakthrough Building upon their previous success of creating a revolutionary test to diagnose rapid cases of meningococcal disease, the “Bug Detectives” at QCMRI’s Queensland Paediatric Infectious Diseases (QPID) Laboratory are now assisting with field trials of a novel meningococcal vaccine. Acute sepsis (blood poisoning) and meningitis (infection of the membranes covering the brain and spinal cord), are two of the most serious infections encountered by children, especially the very young. When caused by bacteria called meningococci, both infections are characterised by their rapid onset of symptoms. If not diagnosed early and treated promptly there is a high risk of death or severe complications such as permanent brain damage or limb loss. Nineteen-month-old Zaac and his parents understand the importance of early diagnosis. In a single day, this little boy went from happy and healthy to fighting for his life.

“At one stage he flat-lined. I just collapsed,” Zaac’s mum Simone said, “it’s a miracle he’s still here. My boy is a little fighter.” Thanks to a one-hour diagnostic test created by the “Bug Detectives”, doctors in Gladstone were able to diagnose Zaac quickly and connect via telemedicine to specialists at the Royal Children’s Hospital in order to stabilise him. Little Zaac fought hard for his life, and ultimately lost his leg to the deadly meningococcal disease.

might have caught the infection early enough to save his leg. A vaccine could have prevented the traumatic experience altogether. Some of the early research conducted at the QPID laboratory has helped to identify the different strains of meningococcus that are present in the population, and has led to the recent manufacture by drug companies of a vaccine that protects against the most common strain circulating in Australia (serogroup B). This vaccine is undergoing final testing at the QPID laboratory in a large world-wide study to determine its effectiveness, and will soon be available to protect children everywhere from meningococcal disease. Your contribution today will help to fund life saving research that could see a vaccine for the deadly meningococcal disease in the near future and help children like Zaac.

A one-hour test gave Zaac the chance to fight for his life, but a ten-minute test

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“He is on borrowed time,” Anita said, “we are so sad but happy for the time we’ve had with Jack and the smiles we’ve enjoyed from him. He’s even learned to poke out his tongue!” Anita is an inspiration, celebrating every month with Jack as if it were a birthday and cherishing every moment. “We are forever grateful we’ve had this opportunity to be with him. The future is uncertain. Something might happen to give us more time and we’re hoping for another six months, or years if we can,” Anita said, Jack, eight-month-old, omphalocele

Precious Little Jack Eight-month-old Jack and mother Anita are familiar faces at the Children’s Health Foundation, always brightening the day with their positivity and smiling faces. Little Jack has been in the Intensive Care Unit for most of his life, after being born an omphalocele; meaning that he was born with his liver outside of his body. Soon after being born, Jack suffered renal failure and an operation to place his liver back inside of his tiny body failed. The nurses love Jack, who is lively, responsive and always has a beautiful smile for his doting parents. Recently, Jack was placed into palliative care with an unknown amount of time left in his precious life.

Your support can help to make life a little easier for children like Jack and their parents, who spend the majority of their time in hospital. A one-off donation could help to buy toys, games and books to entertain children facing long stays in hospital; life-saving medical equipment that restores a little life; or even fund a researcher to find a cure for childhood illness that will save a life. Joining the “Everyday Wonders” community by making a regular gift to the Children’s Health Foundation can help to support the many little patients like Jack that will spend months or even years in hospital. Your support really does make a difference in the lives of little patients and their families. “If it wasn’t for this hospital, we would never have seen the beautiful things he does and is. We’ve seen so many good things, this place is fantastic,” Anita said. Donate today, and make a difference to lives like little Jack and his mother Anita.

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PO Box 99 Royal Brisbane Hospital QLD 4029 1300 SICK KIDS (1300 7425 5437) info@childrenshealthfoundation.com.au www.childrenshealthfoundation.com.au The Children’s Health Foundation uses your name and address details to keep you better informed of activities and services at the Royal Children’s Hospital. At times, we may share these details (never credit card information) with like minded organisations who may wish to contact you with information that may be of interest to you. In return, these organisations allow us to contact their supporters so that we can reach more generous people like you. If you do not wish to receive communications from a third party, please contact us on 07 3852 1199 or email privacy@childrenshealthfoundation.com.au. In addition if you would like to be removed from our mailing database please contact us on 1300 SICK KIDS.

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Our wonderful team of more than 500 volunteers support patients, families and staff at the Royal Children’s Hospital. If you would like to gain great experience and become an active member of the community, come and join us in helping to work wonders for sick kids!

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Wonder Moment Liz contacted us via Facebook to share her experience as a child with the Children’s Health Foundation. It’s moments like these where we are reminded of the wonders we work each and every day at the Royal Children’s Hospital. Hi there. I am a post transplant patient and from the time I was born til I turned 18, I was a regular patient at Royal Children’s Hospital Brisbane. I just want to say thanks to this Foundation for the amount of work and effort you all put into everything for all the sick kids. I know it’s hard being at hospital as a child, but when special guests or your helpers with games walk through the door of your room it brings a smile to faces. It is all worthwhile and for many families seeing their child smile or laugh and forget they are sick just for a moment that makes all worries and pain go away. So thank you all from the bottom of my heart and many many more children smile because of you!

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Liz


B105 Christmas Appeal Works Wonders B105’s annual Christmas Appeal, supporting the Children’s Health Foundation, raised over $406,000 funding much-needed equipment for the Royal Children’s Hospital. The Appeal ran from the 3rd to the 7th December and donations continued to come in from generous individual donors and organisations even after the final broadcast. During the week, b105’s morning crew, Labby, Stav and Abby encouraged listeners to raise as much money as possible to help sick kids around Christmas time. With the support of celebrities and corporate groups, Labby, Abby and Stav held outside broadcasts throughout Brisbane with live performances, trampolines and a baby animal farm. During the live broadcast at the Royal Children’s Hospital on Friday 7th December, Coles generously donated everyone a hot breakfast and with a gold coin donation, hot coffees were provided by The Coffee Club. McDonald’s stores around Brisbane also opened their doors and drive-thru’s to energetic volunteers that eagerly collected for the Christmas Appeal. In addition, Commonwealth Bank volunteers happily received and processed 1,641 donations and pledges

through the Christmas Appeal hotline, which raised an amazing $184,437 in just five days! For the past 18 years, b105 listeners have donated to the Christmas Appeal and helped to brighten the lives of sick kids and their families. This support has directly touched the lives of many kids and their families by helping to purchase life-saving medical equipment and fund groundbreaking research into childhood illness and disease. With the help of the Brisbane community and numerous organisations, the total raised over the past 18 years has topped $10.8 million. A big thank you to sponsors such as The Coffee Club, Coles and Commonwealth Bank for their time, donations and fundraising efforts. Thank you Brisbane for your generosity in helping to work wonders for sick kids past Christmas!

Get your copy of the 2013/2014 Entertainment Book and help us work wonders for sick kids! The Entertainment™ Book is a local restaurant and activity guide that provides valuable offers from the finest restaurants, activities and hotels. By purchasing a copy, the Children’s Health Foundation will receive a percentage from the sale of each Book and your support will help work wonders for sick and injured kids throughout Queensland. To purchase your copy, visit: www.entertainmentbook.com.au/orderbooks/226g657

Children’s Health Foundation Queensland Phone: 1300 368 327 | Fax: 07 3852 2597 | Email: info@childrenshealthfoundation.com.au PO Box 99 Royal Brisbane Hospital QLD 4029 | ABN 11 607 902 687 www.childrenshealthfoundation.com.au

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Care for Kids Newsletter  

Chidren's Health Foundation Newsletter, Issue 1

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