BALLARAT toddler Mitchell Buckley should have been blowing out four candles on his Lightning McQueen birthday cake earlier this month while his twin sister Kenzie was cutting her Hello Kitty cake.
The two cakes adorned the table at the Buckley twins’ fourth birthday gathering, but Mitchell was not with his family for the celebrations.
On March 29 last year, at the age of two, Mitchell died of complications due to a condition called Noonan’s Syndrome.
His loving parents Bek and Ken said the family, which also includes older sister Chloe, enjoyed talking about Mitchell.
“As a family – we’ve always talked about him,” Ms Buckley said.
“We don’t want the girls to forget...we all miss him.”
The family visits his grave once a week, where his sisters talk to Mitchell and tell him what they have done during the week.
His family knew Mitchell did not have the perfect health, but never thought he would die at the age of two.
Ms Buckley said his health problems was something she hoped he would grow out of or at least be able to live with.
After suffering breathing problems as a baby, Mitchell was initially diagnosed with asthma, shadowing on the lungs, bronchiolitis and ear problems.
He was referred to Ballarat disability support group Pinarc for speech therapy and physiotherapy after Mitchell was found to suffer from slow speech and motor skills.
But when Mitchell suffered his first “episode” – similar to a cardiac arrest – Ms Buckley and her husband knew their son’s condition was serious.
They took their son to Ballarat Health Services Base Hospital, but Mitchell was transferred to Melbourne’s Monash Medical Centre 24 hours later.
“He was always a heavy breather but we’d been told he was asthmatic,” Ms Buckley said.
“He’d been misdiagnosed for the first two years of his life.”
It was after his first episode that Mitchell was finally diagnosed with Noonan’s Syndrome, a genetic disorder affecting mobility, heart, stature and ears.
His parents were also told Mitchell had high pressure in his lungs, which enlarged the left side of his heart leading to another diagnosis of idiopathic pulmonary hypertension.
After four months of hospitalisations, Mitchell died on March 29 last year.
Living through what is arguably the toughest time of their lives, the Buckleys remain a happy family, although it is a different kind of happy.
“Our priorities are totally different,” Mr Buckley said.
“We want to give our girls everything we can. We want to give them memories to grow old with. We’ve been going through the grief part – now we’ve just got to try and be happy with what we’ve got and have the best for our girls.”
Helping the family cope with their grief is an organisation called Very Special Kids.
“Whether it’s a coffee or phone call now, or helping plan the funeral when he passed – they’re still there for us all the time,” Ms Buckley said.
Very Special Kids chief executive Sarah Hosking said the organisation supported more than 800 families across Victoria throughout their experience of caring for a child with a life-threatening condition, from diagnosis through to recovery or bereavement.
“Just like the support given to the Buckley family during their time of caring for Mitchell and following his passing, Very Special Kids works closely with regional families to understand their needs and offer appropriate support, such as counselling, respite and bereavement support,” Dr Hosking said.
“We currently have 17 families across Ballarat that we work with.”
Tomorrow, members of the Very Special Kids organisation will be in Ballarat to help raise funds and awareness of the group.
Ballarat people are being asked to give generously to this month’s Piggy Bank Appeal, which aims to raise more than $1 million for Very Special Kids.