Red tape hurdle delays child's life-saving treatment

A MARYVALE boy's life-saving surgery is being delayed by red tape and government paperwork.

Sonya Bowles' eight-year-old son Angus requires surgery for a life-threatening condition.

He was meant to receive treatment this month, but a succession of delays has meant he may have to wait until next year.

Mrs Bowles hopes it will not be too late.

"We're thinking early next year," she said.

"We were hoping it will be sooner rather than later.

"We were thinking it would be this year, but there's a lot of paperwork and a lot of letters to go through. It's a long process."

Mrs Bowles said Angus was deteriorating and needed to have the surgery soon.

"Sooner than 12 months if possible," she said.

"At the moment we're constantly mixing medication and having to try different combinations of medication to find what works best.

"Some of the specialists we've seen have commented that Angus' condition has deteriorated since they've seen him the previous time.

"His learning at school has also stunted a bit."

Mrs Bowles estimates it would be approaching a year since first making the move to obtain a quote.

"It would have been late last year, early this year when we first got in touch with our neurologist," Mrs Bowles said.

"About four months ago our neurologist went to a conference where he spoke with the surgeon and it sort of got renewed from there.

"We need a quote for the treatment to put with the application for the government grant. Once the government gets the application they have to approve it and wait for the funds to become available.

"Part of the process is also to have a specialist in that field consult the person and determine whether the person needs to go.

"In our case, the doctor has seen Angus twice and has said he needs to go so we're getting closer."

Mrs Bowles said the family was in the process of applying for two adults to go with Angus.

"The grant pays for Angus' treatment and one adult," she said.

"We're currently applying to ask for two adults to go with him.

"Looking after Angus is really a two-person job, particularly on a long plane flight.

"He also won't be in hospital the whole time, so we'll have to pay for accommodation in hotels and other costs."

Mrs Bowles said it was a step forward to learn where Angus would receive treatment.

"We had two options - Phoenix in Arizona, or Texas," Mrs Bowles said. "It is now settled that Angus will receive treatment at the Texas Children's Hospital.

"It's good to know where we're going so we can start looking at accommodation."

"I've also been able to join a Facebook group with other families whose children have had the same procedure and post-surgery results have been very positive so that gives us a bit more hope he will be able to live a normal life afterwards.

"We'd just be happy if it meant less meds, seizures and stopped the decline.

"That would be an improvement for sure, it just depends to what extent."

Topics:  delay editors picks red tape

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