WHEN Aiden Koch was two years old, his parents, Bonita and Merv, were told to prepare for his death.
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The Tongala family were in the intensive care unit and didn’t want their first-born child’s last moments spent in a hospital, so they were put in touch with Very Special Kids.
Very Special Kids is a not-for-profit charity that supports families caring for a child with a life-limiting condition.
It provides professional psychosocial counselling all around Victoria, including the Hume region, and has Victoria’s only children’s hospice for respite and end-of-life care.
“It was such a hellish time and we thought there had to be a better way to say goodbye to our son,” Bonita said.
“We visited the hospice in Melbourne and from then our life completely changed."
Aiden was born with Lissencephaly Walker-Warburg syndrome, a rare genetic condition that impacted the development of his muscles, brain and eyes.
It’s the most severe genetic condition in the congenital muscular dystrophies group, and so rare he was just one in a handful of children in the whole world with it.
Aiden didn’t die as expected, but the family began being supported by Family Support practitioner Jenni Coldwell, who supports families across the Hume region, as his life expectancy wasn’t great.
“From then on, we got to know Very Special Kids very well, we used the hospice for respite, but Jenni’s counselling of the whole family was priceless,” Bonita said.
“Little did we know then that we would end up needing her more than ever a few years later.”
Fast-forward six years, Aiden sadly died in 2013 at the age of eight.
But this time Bonita and Merv knew exactly what to do.
They brought Aiden to the private end-of-life area in the Very Special Kids children’s hospice.
“We spent a week there and it just gave us the time to be with Aiden, but to also process his death, plan his funeral and, because we wanted to take him back to our homeland of New Zealand, there was a lot we needed to do to get that arranged as well,” Bonita said.
At that stage, the couple had also welcomed daughter Amber – and at two years old, Bonita said it was just amazing being in the hospice because there were other kids there for respite stays.
Amber was able to join in the activities, such as music and art, and just be with other kids.
“Instead of it being a really horrible time, it turned into a positive and happy experience,” Bonita said.
“It sounds weird to say, but it was as good as it could ever be.”
Merv’s parents also flew over from New Zealand and joined the family onsite, where Jenni was able to provide counselling to the entire family.
Merv’s sister, Marlene, had died as a teenager and his mum, Margaret, hadn’t received any grief counselling at the time, so Jenni was able to provide some overdue grief counselling to Marlene, as well as counselling around Aiden’s death.
“That’s the great thing about the Family Support service, it’s for the entire family,” Bonita said.
“Jenni helped each of us in different ways – she helps Amber to this day with how to keep the memories of her brother alive – she helped Aiden’s grandmother, and she’s helped both Merv and I."
The family continues to be supported by Very Special Kids for seven years following Aiden’s death.
“We probably need more help today than we did when Aiden was alive,” Bonita said.
“Friends and family naturally disappear, the medical team disappears, but Very Special Kids stays around for as long as you need them. Meeting other parents, through VSK, whose children have died is also priceless.
“Until you’ve been through the death of a child, you don’t know how your grief will manifest, so I can’t put a price on the support we’ve been given from this wonderful organisation. It really is unique to Victoria and Australia."
The Koch family is fronting Very Special Kids tax appeal this year, which has been extended to August.
When COVID-19 struck, the hospice was closed, except for end-of-life care like what Bonita and Merv received.
As an 80 per cent self-funded organisation, COVID-19 has impacted donations and the running of annual fundraising events, resulting in $2 million of lost income.
The Koch family are now urging the community to donate to this important charity.
“I don’t think I could ever explain what Very Special Kids gave us,” Bonita said.
To donate, go to vsk.org.au/donate
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