A Wyndham family is pulling out all stops to give three children with a fatal genetic condition the chance for a longer and better life.
Tarneit grandmother Sue Tantaro is doing all she can to support her three grandsons – Anthony, Jakob and Lukas – who were all born with Duchenne muscular dystrophy (DMD), a hereditary condition that causes muscle wastage, breathing difficulties and heart problems.
The degenerative disease means by the time the boys are 12, they will lose their ability to walk. In their teens, they’ll lose their upper body function and will eventually become quadriplegics.
Most DMD sufferers usually die from heart or respiratory failure in their early to mid 20s. There is no cure.
For Anthony, nine, the steroids he uses as part of his treatment have stunted his growth. He can’t do simple things like putting on his own socks, and mostly relies on his motorised scooter to get around.
His seven-year-old cousin, Jakob, has also started using a scooter and is suffering from a speech impediment. Jakob’s younger brother Lukas, 4, is completely non-verbal, but his movements remain normal for a child his age.
Both Anthony and Jakob are taking part in a trial for the drug Ataluren, which helps to slow down the effects of the disease.
However, Ms Tantaro said there is a fair chance the boys are on a placebo and with full approval for the drug about five years away for Australia, the family plans to send the boys to Italy for treatment.
For now, the family has set up a trust account – the Cousins Crusade Appeal – and is raising money to fund the overseas treatments and to cover things the National Disability Insurance Scheme doesn’t cover, such as accessible vehicles, scooters, wheelchairs and regular physiotherapy, speech therapy and hydrotherapy.
Ms Tantaro estimates it will cost about $40,000 a year for each child to access the drug, and more than $1 million to care for the boys over their lives.
Ms Tantaro is building a specially-equipped respite home for her grandsons. Her daughters have had to stop working to become full-time carers for their children.
“I cry every day,” she said. “My family has been on this journey for over four years and struggles every day to keep everything together.
“This drug will give the boys a longer and better quality of life, hopefully until a cure is found.”
The family has teamed up with F45 Training, which will run six fundraising sessions across its Werribee and Hoppers Crossing fitness studios on June 14 and donate all proceeds towards the boys’ overseas treatment.
Tickets are $45, and include an introductory four-week membership to F45 Werribee or Hoppers Crossing for any non-members. To book, go to bit.ly/2IwVtUJ
