Our Wauchope local is a mother of three grown children, and a proud grandmother twice over.

But what makes her story remarkable is that up until three years ago, she was the sole carer for Michael, her 27-year-old son, who lives with the rare, neurodegenerative genetic condition, Sanfilippo Syndrome.

Sanfilippo Syndrome is a metabolic disorder that affects the Central Nervous System.

Sadly, there is no treatment or cure yet available to people diagnosed with this degenerative disease.

So, for Penny to be responsible for Michael’s ongoing and increasingly complex care needs alone,  was an overwhelming and somewhat daunting commitment.

It wasn’t until 2016, when Michael was 25 years old, and six feet tall, that Penny’s physiotherapist helped her realise that the situation had become more than one person could handle. 

Penny learned that help for both her and Michael was possible and the first step was just a phone call away.

With the understanding and assistance of health professionals who recognised that both Penny and Michael needed support, Penny was able to contact the Department of Ageing Disability Home Care (ADHC).

They were quick to implement welcomed support to Penny, also ensuring that Michael had the equipment, hands-on care and support he needed.

The National Disability Insurance Scheme (NDIS) was launched in 2016 and Michael joined in July 2017 once it was available on the NSW Mid North Coast. 

This provided a greater breadth of care and support services to Michael’s care management.

Through the NDIS, Penny now works with a Plan Manager, who is a qualified accountant and who administrates the financial aspects of Michael’s NDIS funding package.

Together, they have been able to build on Michael’s original care programme whilst maintaining his original care team and supports with whom importantly, he had developed a wonderful rapport. 

Michael’s team now consists of his Support Co-ordinator, Occupational Therapist, Physiotherapist, Speech Therapist and Behavioural Specialist on a weekly basis, as well as his support worker who lives in his home to help with after-hours care.

His care team from Bundaleer Home and Community Care manages Michael’s personal care needs morning and night – being accountable for his showering, medication management, meal preparations and assistance. 

“Michael responds very well to routine,” says Penny. “So the fact that Bundaleer is able to send the same team of carers every day is an absolute Godsend.

“And although he is primarily non-verbal, you can certainly tell that Michael loves his carers, which gives me such reassurance 

“One of the best things about what the NDIS has given us is the support network.

“I get to work with a team of experts in their field about what’s best for Michael, which in itself is a phenomenal relief because a Sanfilippo patient’s needs can change quite quickly.

“And not being a medical professional, I have to say that brings me a huge amount of relief that this responsibility has been lifted from my shoulders.

“The other thing that I love is that by having all of Michael’s care needs professionally met, means I  have a new lease on life.

“I now get to have quality time with my son, as his Mum, like watching Disney movies which is one of his favourite things to do,” Penny said.

“I’m also very thankful to have our Bundaleer team monitoring Michael’s meal as swallowing is something that I know he is having an issue with.

“I have the peace of mind knowing that he is getting the nutrition he needs in the best form on any given day. And I have the added confidence that, if there is ever a reason for concern, Michael’s entire care team share information and work together - so you know his well-being is the whole team’s number one priority - which in itself is pretty special.

“The NDIS has been a life changer for us. Clearly, I’m not getting any younger and Michael isn't getting any smaller. The reality of this disease is that his needs will only increase as time goes by.

“Having this support with Bundaleer in place now means he is set for life.

“When Michael was first diagnosed as a six-year-old, we were told his life expectancy would be early teens at best.

“Now with the advances in medicine, Michael could live for many more years.

“It is good to know that Michael will always be well taken care of.”