Thank you to everyone who has so generously supported Hunter and shared his story.
Hunter is ten months old, and has been diagnosed with Nemaline Myopathy, a congenital condition which renders his muscles very weak which impacts his ability to cough and swallow and makes him very vulnerable to life-threatening complications from common viruses such as colds. As a result he spent the first 5 months of his life in hospital, and almost an additional 3 extra months since then.
When he was initially discharged at 3 months, we were overjoyed, nervous, over the moon and scared all at once, but this was short lived. Just two weeks later (on my wife's birthday) Hunter was rushed back to the hospital, after I had the scariest experience of my life- having to perform CPR on my own baby. He had contracted the common cold, but this led to breathing difficulties, pneumonia, and another two months in hospital.
In early December, Hunter developed difficulties in breathing again. He was rushed by ambulance to hospital, where he was admitted with a partially collapsed lung and transferred to the Pediatric Intensive Care Unit.
He developed RSV pneumonia - a particularly notorious virus that can severely affect even the healthiest kids. It almost killed Hunter before we even knew he had it. Over the next nine weeks (of which the time included Christmas, New Year, my and his big sister’s birthday), we endured the most horrific time of a parent’s life – watching helplessly – as the doctors did what they could to keep him breathing. They tried three times (unsuccessfully) to get him to breathe on his own again, but failed miserably, due to a lack of respiratory physiotherapy support in the public healthcare system.
It was then, that a dear friend of ours started the “Help for Hunter” campaign. It was only because of the outpouring of help from family, friends, and strangers who learnt of Hunter’s story, that we were able to engage with three private paediatric respiratory physiotherapists (which cost more than AUD$40,000 in three weeks!), whose round the clock treatment helped Hunter to learn to breathe on his own again.
Now back at home and once again due to the generosity of the people of Hong Kong and friends and family at home Hunter has been able to be on home leave, as we have been able to rent an oximetre, BiPap machine, home suction machine and cough machine – medical equipment that allows Hunter to remain safe at home, rather than in hospital.
However, despite all of this, and after much deliberation, changing of our minds, sleepless nights and pro's and con's lists, we have decided the best thing for our family is to leave the life we have created (and the only home our kids know) in this incredible city of Hong Kong, and relocate back to Sydney, where my wife is from.
We feel the medical care will be more suited to us - not only because his condition is better understood medically in Australia (Hunter is only one of two confirmed cases in Hong Kong) but the "care" part - more holistic in the therapies Hunter needs and consideration of family and emotional well-being. Most importantly, it's where a huge amount if our family is, and the support and love that our family provides is priceless.
In order to do this, the flight home will require a pre-arranged medical stretcher on flight, plus a medical escort team comprising a doctor and nurse. He will also need patient transport / ambulance to and from the hospital to the airport.
We are so grateful for all the generous donations, as the remaining funds will go towards the cost of transporting Hunter home, which is roughly AUD$60,000.
We are also hoping to buy the medical equipment (listed above) rather than rent it so it can be taken on board with them during the flight and will save the ongoing and long term rental fees.
We would be very grateful for any donation towards the costs of Hunter's treatment. Leads or contacts at Qantas or Cathay Pacific that may help with the cost of the flights, International medical evacuation organisations that may be able to lower the costs. Specialists, therapists or support networks in Sydney also greatly appreciated.
Leesa and I have been humbled by the outpouring of support from our friends and family and people who don’t even know us!
Despite all his challenges, Hunter is a happy and loving baby, who laughs and smiles like any other. I don't want him to lose that and I don't want to lose him. He is my inspiration to be a better person.