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The Sammut Family
exactly what they were hoping for him to take part in the treatment .
Harry has now been to the USA three times to receive the DFMO drug , and so far , it has been working very well , but travel to the USA isn ’ t a possibility for all families because of costs and the health of their child . Julia and Matthew were on board for something to be done to help the other children who needed this potentially lifesaving treatment and did what they could to raise awareness of it .
Lucy Jones , the CEO of Neuroblastoma Australia headed up a campaign to get the Federal Government to grant early access to this life changing drug in Australia and help Aussie families affected by this devastating disease .
The hard work behind the scenes paid off and in July the Federal Health Minister , Mark Butler , announced that DFMO will now be available free of charge to families in Australia , meaning trips to the USA are no longer the only way to get treatment .
This is fantastic news for Harry and his family and all the other families across Australia who need access to the drug . However , even though it is now available here , Julia and Matthew are still considering if they should continue with their overseas treatment .
“ We are very happy with the team in the US , and as Harry is on a trial , to pull him out of the trial would mean his results so far would be insufficient and
possibly irrelevant if he doesn ’ t complete the full five visits . The trial team wouldn ’ t be able to track his long-term progress nor use his medical results for the trial if we pull him out early .”
The trial that Harry is part of is not only important to him , but to any other family who potentially face this disease with their own child .
Removing Harry from this trial could take away vital information that the doctors could use , but treating Harry here would mean no requirements for travel and the costs incurred . You can see the difficult choice that is ahead for the family .
Harry will still face challenges along the way with his health , and his family have a Go Fund Me page where you can donate to help them financially . The link on his Facebook page , which will keep you up to date with what is happening with treatments and news about Neuroblastoma . You can find his Facebook page at www . facebook . com / HarrysFightAgainstNeuroblastoma . In the meantime , Harry is now half way through his treatment and is starting to feel well enough to join in some of the usual activities that 11 year old boys like to do , like returning to his beloved soccer .
Regardless of where he receives the last of his treatment , Harry and his family are true battlers , and we wish him the very best health in the future .
Enjoying time as a family between hospital treatments for Harry .
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THE HILLS INDEPENDENT theindependentmagazine . com . au ISSUE 112 // OCTOBER 2024 7