Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
Five year old Taj was born on 8 November 2010 with cystic fibrosis, a life-threatening genetic disorder that primarily affects the respiratory system, the digestive system and the reproductive system. The condition causes the child’s mucus glands to secrete a very thick and sticky mucus which clogs the tiny air passages in the lungs and traps bacteria which can lead to repeated infections and blockages. Taj was also born with meconium ileus, a bowel blockage that is often present in newborns with cystic fibrosis.
Taj underwent his first operation to clear the blockage at just two days old, and spent the first three and a half months of his life at Princess Margaret Hospital for treatment of issues relating to his cystic fibrosis. During this time, the doctors at Princess Margaret Hospital had to give Taj two stomas which meant another four operations and general anaesthetics, not to mention a lot of stress for his mum Lisa, dad Guy and older brother Ben.
Living with cystic fibrosis is an ongoing ordeal for Taj and his family as he has to take enzymes with all the food he eats in order for it to digest properly. This is on top of up to another nine medications a day, three-monthly visits to Princess Margaret Hospital for clinic appointments and annual bronchoscopies and CT scans, which must be performed under general anaesthetic.
Taj also undergoes a physiotherapy program twice daily which involves using a mask to breathe in and out for 15 minutes at a time, and he also uses a nebuliser every night to clear the mucus in his lungs away.
Despite all this, Taj has a cheeky personality and loves swimming, gymnastics and especially, playing footy with his brother Ben to keep fit and healthy.
His family are super appreciative of Princess Margaret Hospital for all their support and help so far and are thankful of how Taj continues to receive the best treatment from its staff, equipment and facilities.
“Taj’s condition was very scary for us when he was first diagnosed. Having him in hospital for so long in the initial stages of his life, as well as so frequently in subsequent months, was an exhausting experience,” explains Lisa.
“But the staff at Princess Margaret Hospital were so brilliant in helping us understand his condition, it allowed us to cope a lot better throughout Taj’s long stay in hospital. We really appreciate those that donate to PMH Foundation as we have seen first-hand how the support has such a positive influence on patients and their families. We are so grateful that our son has had access to the best staff, medical equipment and support and even though Taj has a long journey ahead of him, it’s comforting to know that PMH will always be there to support him.”