Portavin Perth’s Production Manager Dave Cleary started his work in the wine industry as a vineyard cellar hand in Victoria’s picturesque Mornington Peninsula in the early 1990’s. In 1996 he enrolled in a winemaking degree at Charles Sturt University and upon completion he moved to Denmark (WA) and commenced work as a winemaker with West Cape Howe Wines. Dave joined Portavin in August 2011 and now manages our busy production department in Western Australia.
When Dave along with his wife Jane and son Jackson relocated to Perth, Jane soon became pregnant with their second child. Here is their story of the incomprehensible loss of their baby Archer to an almost unknown disease and their dedicated commitment to raising funds to support ongoing awareness and research to find a cure.
Their story has touched the hearts of the entire Portavin team and we encourage anyone who has the means to assist where they can.
Our Story by Dave and Jane Cleary
Three years ago, we should have been celebrating the miracle of the birth of our youngest son, Archer. But instead we were in and out of hospital trying to work out why he was struggling to survive. Problems were evident well before his birth was induced at 33 weeks where scans showed his lack of weight and size – indications that something was just not right.
Baby Archer spent the first 6 weeks of his life in the neonatal unit, under 24hour care. He was subjected to regular, painful tests – all in a quest to find out why his liver was malfunctioning, why he was not putting on weight, and why he was unable to maintain a regular body temperature. Possible diagnoses were thrown about by different specialists, and as a parent it was so hard and increasingly frustrating to see our young baby suffering, while not getting any firm answers and no indications that he could be made well. At 6 weeks of age, Archer had a routine audio test which showed that amongst his other ‘problems’ he was also profoundly deaf in both ears.
After initially picking up and doing quite well following his discharge from hospital, a mild virus caused a rapid decline in his health and so began our long six weeks back in hospital undergoing further tests – these included multiple blood/urine tests, CT scan and liver and muscle biopsies. Results still had doctors scratching their heads until one specialist looked at the bigger picture – were all of Archer’s ‘problems’ the symptoms of one disease?
This was when mitochondrial disease was suggested. Mitochondrial disease (or mito) is where the body’s cells are unable to produce enough energy to function properly, resulting in cell death, system failure and ultimately death (often compared to trying to function with a flat battery). View more on this disease here: www.amdf.org.au
Tragically children diagnosed with mito will not survive past their teenage years, and the earlier the onset of symptoms, the shorter the expected life span. It is a genetic condition, with one in 200 people carrying the gene mutation and 1 in 5000 people in our community battling a life-threatning form of the disease. Put into perspective, one child is born every 30 minutes who will develop mitochondrial disease before they reach the age of 10.
Archer kept the doctors on their toes by showing various signs of improvement – we were increasingly hopeful for some positive answers. The only way we could get a firm diagnosis was with the liver and muscle biopsies – however we were told that we would not receive results for at least three months, possibly a year, maybe longer, due to the complicated and time consuming testing available at the moment.
Mitochondrial disease is a relatively ‘new’ disease, only being recognised (through improvements in technology and research techniques) since the 1980s therefore general knowledge amongst doctors is limited (mito is not even mentioned in medical text books!)
Six weeks following his deterioration, baby Archer’s body began to quickly shut down. At one stage he was at home enjoying watching the Anzac football match on tv with his Dad and older brother, and within 24 hours his temperature plummeted and he was fighting for his life in PICU – his organs quickly failing. Archer passed away at 7 1/2 months of age. We did not receive a positive diagnosis for mitochondrial disease until 12 months later – and only when his tissue samples were sent to a leading international mitochondrial disease research lab in the Netherlands.
We knew we had to keep on going!
Since losing our youngest son to a disease most people (including ourselves) have never heard of, we decided to share our story, raise awareness of the disease and raise money to further research towards a possible cure in the future – in a quest to save other families from going through what we experienced.
We started a website, www.archersstory.com and a facebook page and formed Team Mito (where friends would help spread awareness and raise money through various sporting events). To date we have raised over $125,000 through a variety of events such as wine fundraisers, The Green Tea (high tea) and Jackson’s Footy Tipping For Mito (developed and run by Archer’s big brother in his memory).
Dave has joined the Board of the Australian Mitochondrial Disease Foundation (AMDF) and Jane has gone on to use her experience to help other families around the world who are embarking on a similar mito journey. We both speak publicly regularly and share our story through the media – all in a quest to raise awareness.
With more awareness, more people will be willing to donate towards this cause, and more funds means more research towards (hopefully) a cure!
How you can help:
Jackson’s Footy Tipping for Mito is about to begin for 2016. This competition is run (mostly) by 9 year old Jackson in memory of his little brother Archer to raise funds for, and awareness of mitochondrial disease, whilst enhancing his love of all things footy! If you’d like to get involved in the fun entry is $50 with half of the funds being donated to the AMDF and the remainder going into the prize pool. Details on how to join are below with the first game starting Thursday 24th March.
1) Go to http://www.iTipFooty.com.au
2) Click the ‘REGISTER’ button if you don’t already have an account with iTipFooty.com.au
3) Once you have successfully registered login and, click the JOIN COMP button.
4) Enter Comp # 103075 and Comp Password Jackson.
5) Click join comp…..DONE!
6) Cost is $50 – payable by cash or direct deposit to BSB306-009 Acc No 0156615 (pls add reference FOOTY and tipping name)
A Million Thanks For Your Support!
Dave, Jane and Jackson Cleary