Aileen and Tracey’s Story

“There are two favourite things in my life. One is OnSide and one is my sister.”


Tracey has Down Syndrome and until last year was active and outgoing, planning trips to Tasmania and taking spontaneous weekends away to Albury, Bendigo and Warrnambool with her sister Aileen who is her carer.


In May last year, Tracey suffered two seizures and a stroke. After working on her recovery Tracey then suffered from pneumonia where she was hospitalised and then caught a secondary infection. In February, Tracey was barely able to breathe, suffering from pneumonia again.


Overnight, she went from walking and talking to becoming completely immobile. “I wasn’t sure how I was going to manage,” Aileen tells us. “It was one of the most frightening times of my life. I was bringing home a sister who three months before that could walk and talk and now she was bedridden.”


“We found out about the NDIS at the end of Tracey’s hospital stay and that’s when OnSide came in,” Aileen explains. “Had it not been for OnSide, I wouldn’t have made it through. They gave us our lives back.”




Before Tracey could come home from hospital, Aileen needed a hospital bed, wheelchair, and the right commode. “OnSide took care of everything to get us home. They left nothing for me to worry about.“


“If I didn’t have help from OnSide, I wouldn’t have been able to help Tracey,” Aileen says of her experience.


The NDIS was completely new to Aileen. “We learnt fairly quickly that while the NDIS is amazing, it can be a slow process.” 


With four steps at the entry to the home, Aileen needed to have a ramp built to make it safe for Tracey. “I spent weeks not sleeping. I was so worried that if something happened in the middle of the night, if Tracey couldn’t breathe again, that patient transport wouldn’t be able to take her. I was so afraid. It was our Support Coordinator Fleur who got me through it.” 


While Aileen was told that it may take over three weeks for building a ramp to commence, OnSide knew instantly that something needed to be done. The following Monday, a new crew turned up to Aileen’s house. While there were logistical challenges to overcome, this new building crew made sure that the ramp was built. “Fleur made sure it was done,” Aileen explains. “She said to leave it with her and it was just done. It wouldn’t have happened that way otherwise. It’s thanks to Fleur pushing like she did that we got those results. That’s what she does every day, not just with the ramp but with everything. She’s the most amazing person I have ever met.”


“Since we were connected with OnSide I just can’t stop saying ‘thank you’. Fleur just goes above and beyond.”


“Anyone with NDIS needs OnSide.”


OnSide helps translate the NDIS. Aileen was more than capable, looking after Tracey for the last 14 years. But since Tracey’s health declined, everything changed. “I didn’t even know how to ask for help,” Aileen says. “When Fleur came along I didn’t even know what to do. She would talk things through with me so we could do it together. Simple and plain. She made the process easy.” 


Aileen’s outlook has changed completely. “Never once am I afraid of what will happen because I know OnSide will make it easy.” 


OnSide’s independence means that it can find the best people for the job. Aileen had found that she was “clashing” with Tracey’s previously provided physio. “I said to Fleur that I’d have to deal with that myself and she said: ‘No, you don’t!’. She was able to facilitate everything. She found a new physio and OT who I could communicate with honestly.


OnSide knew we needed the best, and for us that meant a strong and understanding team to work with Tracey. Now she’s so much more mobile. Tracey can sit by herself at the end of the bed. I know we wouldn’t have these results without the right team support.”


“Sometimes I ring the Support Coordinator with the silliest questions and she always says: ‘That’s a great question, let’s work through that,’ and I always feel better afterwards. There’s always a solution.”


“Without OnSide and Fleur, my sister would be in care. I was in a desperate situation. They gave Tracey her life back. They gave me my life back,” says Aileen. She believes it’s the OnSide approach of individualised care and the independence of the company that sets it apart. She is also adamant that it’s the calibre of the people involved that make such a difference.


“When someone has Down Syndrome it can be hard, when they’ve had seizures and strokes it changes everything. With OnSide, I’ve seen what’s inside these people and how much thought goes into everything they do. It’s life changing. They are so important.”


Aileen has always been one to speak her mind. “There are two favourite things in my life. One is OnSide and one is my sister. And everyone I speak to knows about this. I’ll talk to anyone who will listen. Anyone with NDIS needs OnSide.”