Cash boost brings joy to Nathan and children across WA (2024)

Life has not been easy for little Nathan Tasker and his family.

The four-year-old, who lives with cerebral palsy and is non-verbal, has endured countless trips to the doctor, causing untold worry to parents Luc and Stacey.

But since being enrolled in the RESP-ACT program, his health — and his parents’ understanding — has greatly improved.

“It has been very good for us in the sense that not only did it keep his respiratory concerns well in control but also educated my wife and I on treatment,” Luc Tasker said.

“We’ve learnt a lot more about it and how to be able to take control in our own hands.”

Kids across WA will now also get the chance to benefit thanks to a $3.6 million funding injection from Telethon and the State Government.

The multimillion-dollar investment will go to six research projects working to improve the health and well-being of children across the State, including an almost $600,00 grant to RESP-ACT.

The funding is part of a $16 million boost to the WA Child Research Fund over the next four years.

Respiratory disease is the main cause of hospitalisation and premature death in children with cerebral palsy and the RESP-ACT program, which is run out of Perth Children’s Hospital, aims to better prevent and manage the risks.

Children receive individualised healthcare plans with assistance provided by a range of specialists, including speech pathologists, dentists, clinicians and physiotherapists.

Nathan’s treatment includes drumming his back for 15 minutes a day to move secretions from the lungs, working with a food and speech consultant to minimise risk around meal times, and hydrotherapy in a pool.

His father said the program had meant the youngster had been able to visit the doctor less.

“It’s not every day you can reach out for medical help and it’s quite a burden if you have to go into appointments for just regular check-ups or if there is something in fact wrong,” Mr Tasker said.

“We now know when Nathan’s in good health, and when we should be concerned, as opposed to probably guessing a fair bit more in the past.”

And he said he was delighted other WA kids with cerebral palsy would now have the chance to benefit from the program.

Cash boost brings joy to Nathan and children across WA (1)

“We are really pleased with the outcomes of it and what we learnt,” Mr Tasker said. “I think it is great that everyone else will be able to have that opportunity.”

RESP-ACT principal investigator Noula Gibson said a 12-month trial of the program had almost eliminated respiratory hospital admissions within the treatment group.

“Parents have told us that unplanned hospital admissions and presentations to ED is one of the most stressful events for them and so that’s what we are trying to avoid,” she said.

“What we found was the kids in the treatment group actually improved. They had less health service usage than those children in the control group.”

Dr Gibson said the model of care was personalised based on what risk factors children with cerebral palsy had. This can include swallowing difficulties, seizures, reflux and oral hygiene.

“This intervention is about managing those risk factors in a well-controlled and cohesive way involving multiple specialities and multiple agencies,” she said.

“We did the feasibility study and we really wanted to progress and leverage off that and improve on the program and actually have it available so without this funding, we couldn’t do that.

“This is a really good stepping stone to showing what we can do and eventually be able to roll it out across the country.”

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Other projects given grants this year included a new treatment for middle ear infections, personalised medicine for childhood bronchiectasis, research into better outcomes for infants with leukaemia, investigating the risk factors for developing respiratory disorders, and personalised treatments for lung disease in preterm babies.

Medical Research Minister Stephen Dawson said nothing was more important than the health of young people.

“Our children and young people deserve every chance, and this world-leading research that takes place in Western Australia really does put them on a great path, and it wouldn’t be available without Channel 7 and Telethon,” he said.

“We are known around the world for our research, and it really is because of the investment that is made as part of Telethon, but also the State Government, that we do so well.”

The WA Child Research Fund was set up by the Department of Health and Channel 7 Telethon Trust in 2012. Since then, more than $46.6m has been awarded to 160 projects.

Mr Dawson said all of this was possible thanks to the generous donations of everyone across WA during Telethon.

“We all have kids in our family, or nieces or nephews or grandkids, and it’s really important that children who are unwell get the best of treatment and service and so this weekend is obviously a celebration but an opportunity to acknowledge kids in this State,” he said.

Cash boost brings joy to Nathan and children across WA (2024)

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