Hear from Brooke
What condition does your son have?
Brooke: My son Cody has a very rare syndrome. The condition he has is called CFC which is that’s for short Cardiofaciocutaneous Syndrome and there’s only 17 cases in Australia, 17 kids in Australia with that condition.
What are the challenges your family face on a day to day basis?
Brooke: So he’s 6 years old, and he’s not a normal 6 years old. So he’d be about 18 months to 2 years mentally. He doesn’t eat, so he needs to be tube fed 5 times a day. He doesn’t communicate, well, he’s non-verbal, so he communicate in his own way using cards, objects, stamping his feet, and clapping his hands.
I got 2 other kids at home, so it is a real struggle with trying to find out what he wants because he can’t communicate with us. He can’t sit down at a table and eat a normal meal like us, so he needs to have set meal times to be able to eat because he’s tube fed. So yeah, it’s a big impact because he can’t just do what a normal 6 year old does and run around and play, and yeah, he needs to be looked after 24/7 and have an adult with him at all times.
What were you looking for in a disability service provider?
Brooke: A caring service provider was our main object and yeah we found that with Disability Macarthur, they’re loving, and nurturing, the staff are fantastic.
Which service does your son use from Disability Macarthur?
Brooke: Yeah, the service that we used is Sunflower Cottage, the Respite Cottage at Narellen Vale. And the cottage there is set out like a home. Cody loves going there. The staff is so friendly, they’re loving, they’re nurturing and they’re so easy to approach.
Since Cody was 18 months old and he’s now six. So we first started using it for a couple of hours every week, and then it got to 1 night, now it’s 2 nights. It’s roughly once a month we use the service. So yeah, it’s fantastic.
Yeah, it’s to give us a break. It’s to be able to spend time with the other 2 kids and they pick him up. If it’s from a Friday to a Sunday, they pick him up straight from the school on a Friday afternoon and then we pick him up on a Sunday afternoon. And if it’s a Sunday to Tuesday, we drop him there Sunday and they take him to school Monday, pick him up and drop him to school on Tuesday, and then he comes home after every Tuesday afternoon.
So it’s a fantastic service. It gives us a chance to catch up, catch up on sleep, spend time with the other 2 kids, watch them play sport without having to worry about Cody. Yeah, and he loves it. He loves the big ball pit, so yeah, really good.
How has Disability Macarthur made an impact to your family?
Brooke: It’s made a really huge impact on us as a family. Just being able to drop him off and know that he’s in good hands. That’s what we feel most comfortable with. And if there is a problem they’ll ring and just verify things with us. If he’s sick, they’ll ring us and we’re only around the corner from where they are so it’s really good. But yeah, it’s definitely made a huge impact. It just gives us that chance to spend time with the other 2 kids, yeah. That’s it.
Would you recommend Disability Macarthur to other families?
Brooke: Definitely, Disability Macarthur have been a Godsend to our family especially with the Respite side of things. All staff across all aspects of Disability Macarthur are fantastic. They’re caring, and they’re very, very approachable. And I do recommend Disability Macarthur to everybody. It’s just a fantastic service provider.
To find out how we can help you and your family, give us a call on 02 9603 7011 or complete the enquiry form for a private and confidential conversation.