Family's plea for 'life-changing' upgrade to help boy, 5, with rare disease

Brianne Tolj
·3-min read

A community is rallying around a Victorian family as their son battles an incredibly rare degenerative disease.

Alex appeared to be a typical newborn when his parents, Bess and Mitch Petronijevic, welcomed him five years ago.

Bess, 38, told Yahoo News Australia she had a pretty standard pregnancy with her first child and he passed all of his initial tests after birth.

However, by the time Alex was six months old she began to notice he was not reaching certain milestones like rolling.

Alex Petronijevic in a wheelchair, parents Bess and Mitch, and a baby sibling.
Alex Petronijevic appeared to be a typical newborn when his parents, Bess and Mitch, welcomed him five years ago. Source: Supplied

The couple took their son to a paediatrician who Bess said requested Alex undergo a genetic test immediately.

After two weeks, they received the news the five-year-old had Pelizaeus Merzbacher Disease (PMD) – a rare form of leukodystrophy.

PMD is a genetic disease that affects the white matter around the nerves of the central nervous system, preventing messages from being able to travel properly throughout the body.

There are less than 1,500 cases around the world. Alex is wheelchair-bound and non-verbal.

Pictured is a smiling Alex Petronijevic.
When Alex was six months old Bess began to notice that he was not hitting certain milestones like rolling. Source: Supplied

“It was a big shock to the system,” Bess said.

“I think we just felt a little bit numb for a long time because it's really hard to accept a diagnosis like that.”

Alex’s condition is degenerate and doctors initially told the parents children with the disease typically live until the age of 10.

By connecting to families with loved ones with PMD online, Bess said she has learned of some men who have reached their 30s and 40s.

The mum said she has been able to find solace and help through online groups as well as the Very Special Kids organisation.

Alex and his sibling laying on a bed.
Alex’s condition is degenerate and doctors initially told the parents children with the disease typically live until the age of 10. Source: Supplied

‘It would be life-changing’

Although the kind words and advice go far, Bess, who gave birth to the family’s newest addition seven months ago, said it has become increasingly more difficult to lift Alex in and out of the car multiple times a day.

Between heading to school, which the five-year-old loves, and travelling between physiotherapy appointments and visiting family, the mum and her car are exhausted.

Because the vehicle doesn’t meet the NDIS’s requirements for funding, the couple’s families and community in Skye, southeast of Melbourne, are rallying around them to help raise money for a new wheelchair-accessible car.

Bess’s sister has also created a GoFundMe account saying she wants to get “these guys rolling together as a family”.

“It would be life-changing,” Bess told Yahoo News Australia.

Alex in his wheelchair next to his sibling in their pram.
Alex is “progressing forward” with school and his physiotherapy, and is learning how to stand up and sit on a stool with assistance, Bess said. Source: Supplied

‘Learning new skills every day’

Alex is “progressing forward” with school and his physiotherapy and is learning how to stand up and sit on a stool with assistance, Bess said.

He’s also using a communication box to help him speak while reading books in class.

“He’s learning new skills every day,” she said.

The five-year-old loves music and always has a cheeky smile on his face, the proud mum added.

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