The long goodbye to 'Liam the Lion', losing his battle with a rare disease before he turned five

Liam Wigg was 18 months old when his parents, Daniel and Teagan, noticed he was not reaching typical milestones.

It was the first sign that their little boy was living with an extremely rare mitochondrial disease known as POLG.

“It’s a genetic disease that unfortunately we were both carriers for, but we didn’t know it at the time,” Mr Wigg said.

After the diagnosis the couple began to search for more information about Liam’s condition, the symptoms of which include nerve and muscle weakness and seizures.

“We struggled to find anyone locally that was along this journey with us,” Ms Wigg said.

Despite being non-verbal and having ataxia, a balance and movement disorder, last year Liam was able to start preschool just down the road from his Monash home, in South Australia’s Riverland region.

It was a chance to be with other children his age, to play with water and dig in the sandpit.

“Little toy cars, little toy trains — he loved carrying them around and playing with them,” Mr Wigg said.

Liam died in July.

He would have turned five tomorrow.

‘Everything was hard’

Despite developmental delays, Liam was able to walk — but his movement was limited and he faced challenges with everyday tasks.

“Everything was extra hard for him,” Ms Wigg said.

“Feeding himself was extra hard — mitochondrial disease pretty much starves the body of energy, so the body can’t produce enough energy to function.

“He would become very tired.

In August 2019, two months before his fourth birthday, Liam started developing seizures.

He was sent to the Women’s and Children’s Hospital in Adelaide and his parents and younger brother, Chase, stayed with him.

Medication helped to get the seizures under control and Liam regained the ability to walk.

He was able to return home with a plan to manage the condition with medication and diet.

But before Christmas he was back in hospital and this time it seemed there was little anyone could do.

“He was pretty much asleep at that time,” Ms Wigg said.

Community remodels home

By March Liam had entered the palliative stage of his care, and the family was given the choice to stay in hospital or return home for his final days.

At this point family, friends and the wider community stepped in to remodel the Wiggs’ home to allow Liam to come home.

“If it wasn’t for the community there would have been no way we could bring Liam home, and that was our one wish,” Ms Wigg said.

The renovation included knocking out walls to create an open living area where Liam’s bed could be set up, right in the middle of the hive of family activity.

Even the backyard was remodelled to allow for Liam’s wheelchair.

“We had to change the house so we could do that, because we couldn’t leave a room and leave him alone,” Ms Wigg said.

‘Liam the Lion’

Liam required everything from bandaging pressure sores on his tiny ears to monitoring his medication, fluid and feeds, all of which were administered through tubes.

There were walks around the block to get a dose of sunshine and cuddles with the family’s rescue cat, Belle.

His parents documented his palliative care on a Facebook blog titled Liam the Lion, so named because of his strength in dealing with the disease.

Ms Wigg described the struggle of keeping him comfortable while the disease took control of his body.

“No matter what we try and no matter what infections he fights off, he will always remain in his bed, not able to move, unable to speak, constantly seizuring, constant medication going into his system through a catheter under his skin,” she wrote.

She said her heart broke at the thought that he may be scared, in pain, or needing a cuddle.

“I’m not sure what tomorrow or next week or next month holds for our beautiful Lion,” Ms Wigg wrote.

Seven months to say goodbye

The blog became a way to stay connected with family and friends and to document their last months with Liam.

“It helped us cope, it helped us get things off our chest and let us know how much love we had around us,” Ms Wigg said.

The seven months of palliative care also offered a chance to prepare for life without Liam.

“We were in such a horrible situation — we were so fortunate that we had seven months to say goodbye to Liam,” Ms Wigg said.

The Wiggs are hosting a fundraising toy drive for the HAS Foundation to raise awareness of mitochondrial disease and to support families with a child in palliative care.

ABC Parkinsons Direct Feed