STAWELL boy Ibitari Offoin broke his leg on Monday last week – a common occurrence for many boys his age.
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However, Ibitari, 11, was born with lissencephaly, a rare, gene-linked brain malformation.
Lissencephaly causes developmental problems, epilepsy and cerebral palsy symptoms. He is nonverbal, fed through a peg and relies on his mother Kim Offoin for all of his daily needs.
Ms Offoin said Ibitari was in hospital every few months.
“His condition is rare,” she said.
“Last week on Monday he broke his leg. He had a seizure and his leg broke while he was sitting in his wheelchair.
“He’s not in as much pain now, I’ve spent the last few nights sleepless at the hospital in Ballarat with him.
“In winter he is also more susceptible to the cold and flu, because he has weak lungs.”
Ibitari attends Skene Street School in Stawell, but only when he is able to.
Ms Offoin said her son enjoyed going for walks in the park.
She is the sole primary carer of Ibitari.
“I do most of the caring on my own,” she said.
Ms Offoin said there was an expectation for parents of children with a disability to be full-time carers, but she said it was stressful.
“I can’t work the hours I need to. I need to care for him,” she said.
“I get some support through carers, to help with the day-to-day things. Most of the time they come to us.”
One organisation Ms Offoin utilises is the Very Special Kids house.
The family started using the Very Special Kids house in 2010.
Based at Malvern, it is Victoria’s only children’s hospice. It provides free-of-charge family support services and respite. Through the house, Ms Offoin has been linked to a counsellor.
“I talk to them on the phone when I need to talk and she arranges meet-ups with other local parents in similar situations, which makes me feel less alone,” she said.
Very Special Kids supports 30 families in the Grampians region and more than 900 across Victoria, who are caring for children with life-threatening conditions.
The organisation provides 24-hour nursing care at Victoria’s only children’s hospice, as well as professional support services for their families.
“It takes a lot of organising to get to the house, but it’s nice to know it’s available,” she said.
A giant piggy bank will visit Stawell’s Commonwealth Bank on July 19 to fundraise for the organisation.
The campaign aims to raise $1 million.