Thanks to the generosity of the Border community, an eight-year-old boy living with a rare condition will have more freedom in his day-to-day life.
Kobi Doyle is believed to be one of only a few hundred children in the world living with coffin-siris syndrome, though doctors have been unable to officially diagnose his condition.
Ella Delphin is his mum and full-time carer, and since Kobi’s story first featured in The Border Mail in 2016, Ms Delphin has welcomed Kobi’s first sibling, Harper, into the world.
What’s also changed is Ms Delphin has acquired a new van that will be shortly made wheelchair accessible.
Anthony Burns, who works with Ms Delphin’s partner Darrin Murray at Albury Freight Distribution Centre, started a fundraiser for the family in 2016.
“We’ve had events and trivia nights, and over a couple years we raised $38,000 to get the new car,” Mr Burns said.
“There’s a couple supporters who want to stay anonymous, and there were lots of people that helped, probably too many to thank – but we want to say thank you.”
The family have been using a special needs seat in the Kia van until it is fitted with a wheelchair ramp, using funds from the NDIS.
Even with the more stable transportation, Ms Delphin has been able to take Kobi to the Ballarat Light Show.
“Kobi loved that because it was something he could do – he really enjoyed the lights,” she said.
“He had a bit of a rough year last year with lots of hospital visits; he was quite sick but this year he’s been really good.
“He’s been going to school all the time at Belvoir Special School, and they look after him so well.”
Ms Delphin has been able to connect with other parents whose children are living with coffin-siris syndrome.
“One family was in Perth, one was in Brisbane and there were a couple in Melbourne.
“We’ve been sharing stories and talking about similarities.
“Maybe in the future, we can drive and meet some of them.
“Getting the accessible van was a major goal for us and now its about getting Kobi out and giving him as many experiences as we can.”