Room to move

By MARA PATTISON-SOWDEN
ZACHARIAH Kohinga’s cheeky smile and boisterous personality keep his carers on their feet.
He may not verbally tell them what he needs but those close to the Montrose boy understand exactly what he’s saying.
Zac, 10, has a very rare condition called Fumaric Aciduria, which requires complex medical support and attention.
Despite these limitations he is growing and learning with remarkable persistence and astonishing capacity.
As Zac’s medical needs continue to outgrow the family home, his care workers from support agency Interchange Outer East are throwing a fund-raising event to help the family with renovations.
His mum Lisa had to quit work to become Zac’s full-time carer, with limited funded outside support, and his dad Chris is self-employed so he can help out with Zac’s care when Lisa is exhausted. Zac’s three siblings help with their younger brother and the busy household works like a team to get through each day.
Zac is funded through the Family Choices program at the Royal Children’s Hospital.
Lisa said it was a great program that supported the family, but there were strict guidelines that needed to be followed.
And now the family’s care support is under threat because carers are not allowed to lift Zac, and space is limited.
Lisa said the family of six had quickly outgrown the small house.
“We tried using portable hoists to lift Zac but due to his high tone and complex needs it is too dangerous for carers and Zac,” she said.
“Every room in the house represents something of Zac, from medical and therapy equipment and supplies.”
Lisa said the extension plans, which had taken four years to get approved, would give Zac a practical living space.
“We just need to make a safe place for Zac and his support team to assist in the management of Zac’s care but we’re under time constraints to get this done,” she said.
Lisa couldn’t praise the care workers enough for the work they do with Zac. They are all specially trained to look after Zac, and carer Olivia Thomas has been organising a fund-raiser for the family.
She wanted to do it, not only for Zac, “but the whole family unit is amazing, they’re wonderful people”.
“The family is always welcoming, and despite the sleep deprivation experienced by Lisa, the family remain positive and upbeat,” she said.
Olivia has worked closely with Zac for more than 12 months, and said he was loads of fun to spend time with.
“After a short time with Zac it’s impossible not to fall in love with him,” she said.
“He’s so bright and intelligent and when you talk to him he is so responsive and shares his emotions.”
Lisa said she was humbled by the fund-raiser.
“We can’t get the funding and we’ve had a few people say they’d like to help the building process,” she said.
“But it will be exciting to have the people that support us all in the one room.”
Project Zachariah is the first in a series of fund-raising events to help provide Zac with the support he needs as well as essential respite support.
Tickets are on sale for an evening at the York on Lilydale on Saturday 5 May from 7pm with live music, games, auctions, raffles, door prizes and dancing, or donations can be claimed on tax with a receipt. For further information, tickets, or people with practical building skills that can donate materials or expertise, contact Olivia Thomas on 0417 537 200 or check out Project Zachariah on Facebook.