Diagnosed with Cerebral Palsy (CP), chronic lung disease and an eye disease shortly after birth, it has not been easy sailing for Hannah and her dedicated family, but their love for each other and positivity have gotten them through some tough times.

“When Hannah was born 14 weeks prematurely, an ultrasound revealed she had suffered a brain haemorrhage. Because delays in her development could not be predicted we had to wait until she failed to reach milestones to learn how her condition would affect her,” said Hannah’s mum Richelle.

Hannah’s CP affects her arm and leg muscles, which are continuously working and unable to relax. To manage her condition, she is cared for by a number of medical teams at the Hospital, including a dietician, psychologist and visits the lung and hip clinics for regular check-ups. She bravely underwent surgery last year to correct a hip dislocation and loved spending time with play therapists who provide distraction activities to help her get through any painful procedures.

“We have always felt safe in the hands of Sydney Children’s Hospital. The staff are amazing, the quality of care is very high and extends from the patient onto the entire family. Hannah uses her wheelchair for mobility, but she is very active and has just started horse riding and swimming lessons. We are so proud of her,” said Richelle.

“Upon arrival at Sydney Children’s Hospital’s Emergency Department, we were met by a team of medical personnel ready with life-saving medical knowledge, equipment and a raft of medicine, “ said Annmaree, “once stabilised, Marshall was transferred to the Intensive Care Unit and was on life support for four days.”

To his family’s relief, Marshall gradually began breathing on his own and was transferred to the Cardiac Ward. Genetic testing revealed that Marshall had a very rare genetic heart condition called Catecholamergic Polymorphic Ventricular Tachycardia (CPVT) which is a form of sudden cardiac death syndrome. There is no cure for this condition and the only option available was to implant his heart with an Automatic Internal Cardiac Defibrillator (AICD).

In April 2009, Marshall underwent marathon heart surgery to implant a dual AICD and pacemaker. This life-saving surgery has given Marshall the maximum protection available to save his life should another sudden death episode occur. He continues to take medication to assist in keeping his heart rate at an safe level.

As a result of Marshall’s diagnosis, the whole family was genetically tested. When Annmaree tested for the same heart condition, she also underwent surgery to implant a dual defibrillator and pacemaker.

Annmaree recently shared her story with representatives from BIG W, and thanked them for their ongoing support of the Cardiology Department which saved Marshall’s life.

“Marshall has made a remarkable recovery. He’s happy and active and we are so proud of him. From the bottom of my heart, defibrillator and pacemaker, thank you Sydney Children’s Hospital,” said Annmaree.

Cow parts are hardly ever used in children, especially those as tiny as Riley. But his heart was so malformed surgeons at The Royal Children’s Hospital in Melbourne had to rebuild it. They moved his aorta, closed a hole in his heart and connected his right ventricle and pulmonary artery with the cow tissue. The new parts kept Riley’s heart beating.

Almost immediately after the operation, Riley’s health began improving. He stopped vomiting his milk feed and started eating solids. His skin went from being almost blue in colour to a normal, healthy colour.

Riley’s parents say they were surprised to hear bovine tissue had been used to keep their child alive. But the procedure saved his life and they are relieved and happy he is alive.

Photo courtesy of the Herald Sun

He was born with a rare disease called Prune Belly Syndrome – a condition that’s left him without stomach muscles. Dean is the only person in Victoria with this syndrome and just one of a handful of people with a similar condition in Australia.

He was on a ventilator for the first two-and-a-half years of his life, and was 10 before he tasted food. Cheezels and chicken nuggets were his favourites. In fact, the nuggets were Dean’s breakfast, lunch and dinner for two years, because he liked them so much and they were easy to eat.

Dean is now able to walk, ride a bike, and go to school just like any other kid.

His mum says Dean still faces challenges on a daily level. He often feels alone because his condition is so rare.

“When he’s sick he’s terrible, but when he’s well he’s good,” she said. “But he sings and he enjoys playing, laughing and joking … He’s got a beautiful voice. He wants to go on Australian Idol.”

Photo courtesy of the Herald Sun