Among the multitudes digging deep to help WA’s sickest children this Telethon weekend will be one mum who knows better than most why every donation matters.
Madison Dobels was just 21 weeks pregnant with her second son TeKoa when her waters ruptured in May, 2019.
Doctors told her there was a 95 per cent chance she would be delivering her son as a stillborn.
“I was told I had to start making arrangements for my son’s funeral,” she recalled. “But he held on … I spent six weeks in hospital before he arrived.”
Baby TeKoa Timu was delivered at 26 weeks gestation on June 3, 2019. He weighed just 910 grams.
In the final, agonising weeks of his mother’s pregnancy he was surviving on minimal fluid in the womb — a deficit that caused brain damage and left him with a chronic lung condition.
It was the start of a nightmare of revolving-door hospital visits that the family managed to get through, thanks to Telethon-funded Kalparrin, a non-profit organisation dedicated to supporting the families of children with disability.
It is one of the more than 50 charities to have benefited from the nearly $400 million in donations — including last year’s record $46.3 million total — the beloved fundraising extravaganza has raised over the past 54 years.
Through Kalparrin’s in-hospital support system, Madison was provided with the practical and emotional support that she so desperately needed — offering a safe space to talk as well as help navigating government supports for children with disabilities.
In many ways TeKoa is just like other two-year-olds — bubbly and adventurous.
“Even after everything that he’s gone through, he’s still the happiest little soul,” Madison said.
“He’s got a lot of cords and wires. But he’s so outgoing, and he just wants to get off the wires and play all the time.”
But his bright personality belies the ordeal he has so far endured.
He spent the first 199 days of his life in hospital before being discharged to go home, with oxygen and monitors.
The little boy requires around-the-clock care. He can’t eat orally, and his food is delivered via tubes straight to his stomach.
On multiple occasions, Madison has watched her son turn blue as he struggled to breathe.
“Those first five months in ICU, we nearly lost him a few times. In every system of his body there’s been something go wrong,” the mum of two said.
“Since he was discharged we’ve had 40 to 50 readmissions because of his lungs.”
Those constant trips to hospital take their toll. Madison’s other son Kai is just three — and she is the main carer for both her boys. She credits Kalparrin for helping her make it through the hard times.
“I was in there on my own a lot of the time. It was very isolating,” Madison said.
“But they’ve been there constantly, they come and check on me every time we are readmitted.”
Kalparrin chief executive Carrie Clark said that the program wouldn’t be possible without the generosity of everyday West Aussies through Telethon.
“Telethon enables us to be there with families, right at the point when their child receives a life-changing diagnosis and their whole world is turned upside down.
“Our family support team can help them make sense of their new world and provide a listening ear, information resources and connect them with other families who are travelling a similar path.
“Kalparrin works closely with the amazing teams at PCH and I’m proud that we can be an important part of the journey for incredibly brave families like Madison and TeKoa’s.”
Madison said the support was “incredible”.
“I donate as well,” she said. “Being a single mum I don’t have much money, but seeing where the money goes — it’s game-changing, it’s life-changing. There are really no words for what it does.”
The 54th annual Telethon starts tonight. Last year, COVID-19 restrictions meant that the show was split into two halves. But the 26-hour broadcast is back for 2021. It will open at Crown Theatre, with a prime-time show featuring top-quality entertainment.