When God blessed an ecstatic Angela Mallis with the birth of her one and only daughter, the family puzzle was finally complete. The loving family had finally welcomed their first daughter and sister in a household of three adoring sons. Love, joy, and happiness spread across Priscilla’s parents and brothers’ faces whilst holding their precious little angel. However, little did everyone know that from the moment Priscilla took her first breath on the 25 September 1993, the odds were stacked against God’s newest gift to the Mallis family seeing past her first birthday.
Three months after her birth, Priscilla was diagnosed with a life threatening condition called Cystic Fibrosis. Commonly known as CF, Cystic Fibros is the most common life threatening, recessive genetic condition affecting Australian children. For a child to be at risk of being diagnosed with Cystic Fibrosis, both the child’s parents have to be carriers of CF gene. The disease can affect a number of organs in the body, especially the lungs and the pancreas by clogging them with thick sticky mucus. Repeated infections and blockages can eventually cause irreversible lung damage, which for some can result in the condition turning fatal.
Angela’s memory of the day she was told her daughter has Cystic Fibrosis is vivid in her mind. Priscilla wasn’t diagnosed with the condition until three months after her birth. Her local doctor continually sent Angela and her daughter home. They were told it was just a bronchial cough, and that Priscilla had to put up with it for a few months and she would eventually grow out of it. Despite the doctor’s repeated reassurance to the Mallis family that Priscilla was okay, Angela knew something wasn’t quite right with her baby girl.
“I just couldn’t accept it, I wouldn’t accept it. I could sense that there was something wrong”, said Angela.
“Firstly when I would change her nappy it was very smelly and runny. She was also very salty to taste, and when she was six weeks old, her breathing started to change and she would cough a lot. She would cough so much that she would turn blue.”
Trusting her mother’s instinct, Angela made an appointment with a paediatrician at the Royal Children’s Hospital. It was then she found out the news that her three month old baby daughter was born with Cystic Fibrosis. Just two weeks later and the Mallis’ world was nearly turned upside down when Priscilla stopped breathing and was rushed by doctors to an oxygen box. The nurses didn’t tell Angela at the time, but later revealed to her that they didn’t think her daughter would survive and were surprised she pulled through. Through her families hopes and prayers the brave baby girl survived, and has been a fighter ever since. Angela says will always remember the feeling she had when the paediatrician first broke her the news.
“I had never heard of Cystic Fibrosis”, said Angela, “so when the doctor called all our family together and explained to us what Priscilla has, my reaction was okay, so how do we treat it so it can go away?” The reply she received changed her family’s life forever. “The paediatrician said ‘you can’t’, and that Cystic Fibrosis is terminal,” said Angela, visibly struggling to hold back her tears.
“When he said the word terminal, that was it – I couldn’t hear anything else. Everyone was just in shock.”
Nearly 19 years have passed since that day, and just as the Mallis’ entered that appointment together, the tight knit family left together and have continued to remain closer than ever. During this time Priscilla has undeniably grown into a beautiful and strong woman, honouring the middle name – Hope – her parents had ironically planned to give her before she was born in recognition of Angela’s mother.
Now more than ever, Priscilla and her family know how special the name Hope is, and how vital it is that they never lose it and always remember it. Unfortunately, after her recent admission into hospital – which involved the usual physiotherapy and medication to improve Priscilla’s ailing lung function – there was no improvement. Over the years when Priscilla leaves hospital after a month of treatment, her lung function usually improves between 40-50 per cent of full capacity. This time Priscilla was admitted into hospital with a lung function reading of 25 per cent, and one month later left with a lung function of 26 per cent. As a result a wheel chair and oxygen tank accompanied Priscilla when she arrived home from hospital, but she was just happy to be out of hospital and to be greeted by her family and her beloved pet cat Ash and her loving dog Jade.
Last week more hope and prayers from family and friends were answered, with Priscilla receiving the news that she has finally been accepted on the lung transplant list. Why wasn’t she put on the list before her lungs reached this dangerous condition? The answer is that her lungs simply had not deteriorated enough up until this point. It is a frustrating scenario but one that so many families have to accept when it comes to the lung transplant policy in Australia.
From the day she was born, Priscilla Hope Mallis has been a timely reminder to us all that under no circumstances should we ever give up hope. Her continuous battle has inspired a group of Priscilla’s family and friends to come together to gather support for their special girl, and their mission is titled ‘Raise for Hope’. A dinner/ball is in the process of being organised to raise money for Priscilla. As Angela’s car is on its last legs, the hope is to raise enough money to buy a car that is big enough to help transport Priscilla’s oxygen tanks and wheel chair around. As Priscilla is too sick to fly, her family also hope to raise enough money to take their daughter on a small local holiday. An account has also been set up for anybody who would like to kindly donate towards Priscilla’s cause, as she awaits the phone call for a lung transplant. A Facebook page has been set up (https://www.facebook.com/Raise4Hope) and the support is helping Priscilla stay brave. “I feel it is great everybody is coming together to help get my life back on track”, said Priscilla.
“Everybody is helping to motivate me, and I am starting to get excited thinking about how much my life would be better when I get my new lungs,” says Priscilla.
If you would like to offer your support to Priscilla’s family and friends ‘Raise4Hope’ initiative, or would like to volunteer to host an event to help raise money for Priscilla, please email raise4hope@live.com. Alternatively, if you would simply like to give a gift donation for Priscilla, or have any other questions, please email or donate to Account Name: Priscilla Mallis, BSB: 182-512, Account Number: 962074662.