Campbelltown’s Baltissen family raise funds after son’s muscular dystrophy diagnosis

The average life expectancy of someone with Duchenne muscular dystrophy is mid 20s. It’s this knowledge that’s driving a Sydney family to make as many precious memories while they still can.

The Baltissen family Michelle, Anthony, Lindsay, Logan, and Emma. Picture: Katie Weir – These Golden Days

Logan Baltissen is like any other 10-year-old boy, enjoying adventures with his family-of-five and having a keen interest in reptiles, superheroes, lego and video games.

The only difference between the Ingleburn child and his peers was Logan had been diagnosed with a debilitating condition called Duchenne muscular dystrophy (DMD) at the age of five.

Since January, his health has rapidly deteriorated. This has meant losing his independence in the space of 10 months, with Logan going from walking with minimal aid to using a power wheelchair all of the time.

The average life expectancy of someone with DMD is in the mid-20s, and there is currently no cure. It’s this knowledge that’s driving Logan’s family to make as many precious memories while they can.

His mum Michelle Baltissen said there were a number of obstacles for someone living with DMD.

Logan Baltissen.

“One of the biggest challenges we are experiencing is transporting Logan around to things like regular therapies, visiting family and friends, attending his scout meetings and joining in on outings with family and friends,” she said.

“The use of a power wheelchair assists Logan in maintaining a level of independence, but also comes with some obstacles. It’s not possible to do everything we need to do with a power wheelchair alone.”

While NDIS funding allows Logan to access necessary services and therapies, his family have found it hard getting appropriate support because of how quickly his health has deteriorated.

Dad Anthony Baltissen said it had been difficult to keep up with his son’s needs. After only eight weeks into the current 12-month batch of funding, the family has used almost half of the transport allocation.

While an occupational therapist helps to advocate for Logan, requests can take months to be approved and there’s always the potential they will be denied.

“Navigating the NDIS is not a simple feat, and sometimes we’re waiting months for a request while watching our son’s condition get worse,” Mr Baltissen said.

Logan Baltissen lives with Duchenne muscular dystrophy.

Logan Baltissen pictured with his dad Anthony.

“We repeatedly explain our changing situation and do our best to advocate for Logan’s needs. It’s hard seeing his condition progress and not knowing how quickly support will be in place when his needs change.

“While we’re grateful for the support we receive, it’s exhausting trying to navigate the NDIS.”

Mr Baltissen said they tried to come up with creative solutions while they waited for requests to be approved, which added constant stress on top of the day-to-day challenges.

While the NDIS may help fund some modifications to their proposed new vehicle, they won’t cover the cost of the purchase of private motor vehicles because they consider it a day-to-day living cost.

Currently, Logan is restricted to taxis and school transport only, which limits where and how far he can travel each week.

“Sometimes it’s not even guaranteed the taxi will show or be on time,” Mr Baltissen said.

Logan Baltissen pictured with his mum Michelle.

One of the biggest hurdles is the choice of vehicles which are appropriate to be modified for wheelchair access conversion is limited and expensive.

Having to drop down to part-time and casual work to care full-time for Logan and his two younger siblings, the Baltissen’s earning potential has been impacted.

The family hopes to purchase a Hyundai Staria which would be suitable for the transport needs of the whole family and allow Logan to maintain his freedom and independence as long as possible.

There is far more to Logan than his DMD diagnosis, with his parents describing him as a bright, funny kid with an inquisitive mindset.

“He has a lot to share with people so he if he knows something, he’ll share it with you and that’s how he connects,” Mrs Baltissen said.

“He really gets down when he doesn’t see people and he gets a bit frustrated so without the right motor vehicle his movements are confined to our house.

“As a result, he’s severely missing out on his freedom and independence, and his wellbeing is suffering.”

The family are making a desperate plea to help maintain Logan’s independence and have started a fundraiser to help cover the purchase of a vehicle suitable for wheelchair access conversion.

“We know there are many more challenges to expect as the disease worsens, and we’re simply hoping to give Logan the most normal life possible and make as many memories as a family while we still can,” Mrs Baltissen said.

For more information about the fundraiser, click here.