Brendan is a wonderful child – with a gentle personality and a bright cheeky smile. He has been coming to Allowah for many years now and his parents, Andrew and Yee-Foong, know that whenever they bring him to Allowah, he is going to be surrounded by genuine care and love, as well as whichever clinical and disability supports he needs at that time.
For Andrew and Yee-Foong, the support that they received from Allowah in the early days grew to be an essential part of their lives, evolving with Brendan’s changing needs as grows up.
Doctors had no idea why little Brendan was starved of oxygen during his incredibly fast three-hour birth, despite being so healthy in the womb. Due to these birth complications, Brendan cannot walk, talk or eat. He requires 24-hour care. From the time he was born, the life his family was expecting to live with him was changed forever.
“Brendan was born grey and floppy and had to be intubated for 25 minutes after his birth,” Andrew says. “From there it was just going through tests each day, and it wasn’t until day five that an MRI showed extensive brain damage due to a lack of oxygen at birth.”
Yee-Foong spent six days in hospital, and her newborn son nineteen days. He has since been hospitalised a number of times for corrective surgeries that are needed because of his disabilities. He has also been to hospital many times due to illnesses that are more severe because of his disability. When a doctor pointed out he was having trouble swallowing, a nasal gastro tube was inserted to feed him. And then a gastronomy button in his stomach at just eight months. Life for Brendan and his family became a routine of home care and back and forth to hospital and appointments.
Brendan requires tube feeding five times a day, starting at 5am with the last feed starting at 11pm. Each feed takes around 1 hour 20 minutes, and someone needs to be nearby while this happens. Brendan is also on 13 different medications which have to be taken at 10 different times during the day. His medications are to help with epilepsy, dystonic spasms (a movement disorder that results in unwanted muscle contractions or spasms), and for sleeping. Brendan’s care is complex and takes much of every day. When he is not being cared for by Yee-Foong or Andrew, he needs a team of people with the right clinical and disability knowledge to make sure he has everything he needs and is kept safe and comfortable. He needs Allowah.
Allowah became an essential part of life for Andrew and Yee-Foong. They are marvellous parents, and with their care Brendan lives a good life, full of love and laughter and learning. But like everyone who cares for someone else 24/7, Andrew and Yee-Foong need respite sometimes. And Brendan sometimes needs a place to come where there is a high level of nursing care that’s not a big, public hospital, to recover from illness or surgery. Allowah’s unique disability support services with a strong clinical skill base means that Brendan can come and stay, and Andrew and Yee-Foong know that he will continue to have fun, laugh and learn while being safe.
For Yee-Foong, Allowah is a place “where you know, you can leave your child and feel reassured that they will be loved and cared for.” Andrew says, “with Allowah we have that opportunity to be supported so that we can look after ourselves and our wider family.”
For Brendan’s family, Allowah provides a place of diversity and flexibility and the support he receives has been able to change as his needs change and as he has grown up. Services such as overnight stays, long-week stays, therapies, day or after school care and school holiday programs, along with longer term care, provides options for everyone. Allowah works hard to make every child’s stay one that will make them smile. When you ask Allowah staff what they love about coming to work, every time they will say, “The kids!” And when you ask Andrew and Yee-Foong what they love about coming to Allowah, they say “Allowah understands us. They care for our well-being, as well as that of our son.” That’s something to smile about too.
Thank you for your patience as we update our website to reflect Allowah’s next chapter and the changes announced in June this year. If you have any questions, please contact our CEO Elizabeth McClean at emmclean@pcnsw.org.au.