Emily’s Story
For three year old Emily, every day is a blessing. Diagnosed with leukaemia at only 26 months, this precious little girl undergoes intensive treatment every 10 days for 5 days at time, and endures regular blood transfusions and painful injections as part of her chemotherapy.
Controlling a child’s pain ensures they suffer less physical trauma and emotional distress, giving kids like Emily a chance to recover faster and return to what they should be doing – playing, learning and laughing.
Part of our work is to introduce pain management services to effectively treat and manage chronic and acute pain in children who are hospitalised with cancer, post-surgery trauma, burns and other illnesses and injuries. Your support provides Emily with hope.
Coen's Story
Coen is eight years old and was born with Cystic Fibrosis. Cystic Fibrosis is the most common genetic disorder among Europeans, affecting the lungs and digestive system. There is no cure and prognosis is not good.
Some very lucky kids with Cystic Fibrosis grow up and medical improvements have meant that a few more are surviving until their twenties, or in some cases even their thirties, but every day for these kids and their families is a battle.
Coen's parents had no idea they were carriers for Cystic Fibrosis and as people with Cystic Fibrosis have no mental or physical disability it could only be picked up at the neonatal screening given to all babies. Coen was diagnosed at three weeks of age.
Coen was started on pancreatic enzymes to break down any fat he drank or ate. His parents had to learn how to pat his back, front and sides for a couple of hours each day to help clear the thick, sticky mucus that builds up in his lungs.
Over the first few years of his life Coen was admitted to hospital for three weeks at a time every three months. The mucus plugs up his lungs and catching a bug can cause a lung infection leading to irreparable damage.
About 18 months ago the cystic fibrosis also caused Coen to develop insulin dependant diabetes. He also got a very nasty bug in his lungs that doctors weren't really sure how to treat and it started to take over. Breathing became a lot harder and Coen needs oxygen and a machine to help him breath at night as he now has only half the lung space and he is even more susceptible to other bugs.
As you can imagine Coen often feels frustrated with all the different treatments, the ongoing struggle and the amount of time he has to spend in the Princess Margaret Hospital for Children in WA. But the Doctors and his parents realise just what an achievement it is for Coen to even have celebrated his 8th birthday. Something that those of us with healthy children may take for granted.
Kiara's Story
When Trudy was 8 weeks pregnant with her first baby, doctors discovered that the right ventricle to her baby's heart was missing.
Since the day baby Kiara was born in 2005 she has undergone more than 10 heart operations and has spent every day of her life at the Royal Children's Hospital in Victoria.
Trudy hopes that one day she will be able to take Kiara home to watch her take her first steps, play with her friends and enjoy her childhood, however in the meantime, little Kiara has more procedures and they spend their days at Hospital.
Sophie's Story
To look at this happy photo it's hard to imagine what little Sophie and her parent have been through.
Just before this photo was taken Sophie was diagnosed with Diencephalic Syndrome, a very rare neurological disorder caused by a brain tumour. She had a 6cm cancerous tumour deep in her brain, wedged between two main ventricles, which meant it couldn't be surgically removed.
Sophie was treated with oral chemotherapy for 12 months in an attempt to shrink the tumour and was fed through a naso-gastric tube to maintain her weight. As long as the size of Sophie's tumour remained the same, she was healthy enough to be at home.
But on the eve of her sister's birthday, Sophie began screaming and complaining of a massive headache. She was rushed to Queensland's Royal Children's Hospital. Her tumour had grown 1.5cm in just three weeks.
Sophie underwent a shunt operation to drain excess fluid and remove the pressure on her brain. However, Sophie didn't recover from the operation and went into a coma.
She couldn't eat, drink or even open her eyes. With only a couple of weeks to live, Sophie was sent home on palliative care so she and her family could spend their last days together.
You can imagine how overwhelming it was when suddenly, Sophie gave a smile, and then two days later actually opened her eyes.
Sophie had miraculously responded to the combination of chemotherapy and newly discovered nutritional supplements that were given in a last effort to save her. Slowly she began her recovery.
Although Sophie faces more hurdles than most kids - now fully blind as a result of the tumour - she is a brave little girl who has recently turned 5 and now has the chance to just be a kid.
Sam's Story
Three and a half year old Sam Carmichael from Narrandera in the NSW Riverina had dry skin as an infant but when his first tin of baby food caused him to break into hives and vomit his parents Andrew and Kylie were concerned. He then developed terrible eczema, and no matter what they tried it didn't go away.
During the height of summer in 2004, Sam's skin was at its worst. His eczema was flaring up and he wasn't able to sleep because he was constantly scratching his skin.
Nothing was giving him relief, and Kylie was at her wit's end as Sam was still not eating or sleeping. His skin was red and bleeding from scratching at his wounds. The exhausted family made the six-hour drive to the Allergy Clinic at Sydney Children's Hospital.
Andrew, Kylie and Sam stayed for four days at the Care By Parent Unit and were all able to sleep for the first time in months when Sam settled into the cool environment and received specialist care.
"We were able to get specialist attention from Dieticians, Dermatologists and Immunologists all in the one place - it was such a relief" says Kylie.
Andrew and Kylie were taught how to wet dress Sam. A wet bandage is wrapped along each limb and his trunk and a dry bandage is twisted and wrapped on top so Sam has no contact with his skin and can't scratch.
"Managing Sam is a full time job," says Kylie "We live a life trying to distract Sam from scratching his skin".
Sam's eczema will get better when he grows up but in the meantime the family must make sure Sam doesn't scratch or eat foods he is allergic to which includes milk, eggs and nuts.
Sam visits Sydney Children's Hospital every six months for checkups and further tests to help treat his complex condition. Although Kylie notices that his skin isn't as raw and red as it was previously, it is still a challenge to help Sam feel comfortable. The treatment has helped his family mange Sam's condition better and his happy smile when he plays with his brothers and sister is a great sign of how far he has come.
