It’s the news that no parent wants to receive.
One minute your child is healthy, fun loving and enjoying life. Then their world is turned upside down with a mysterious illness followed by a devastating medical diagnosis.
This is the situation that faced Brisbane mother of three Tracey Hifo and her eldest daughter Aurelia. In just 18 months Aurelia has gone from being a perfectly well child to being severely disabled physically, now requiring a wheelchair for mobility.
After a whirlwind of medical appointments and Aurelia’s condition deteriorating rapidly, she was diagnosed with Leigh’s Disease. The disease is caused by a dysfunction in the brain responsible for muscle function, and is an extremely rare condition that results in the progressive loss of mental and movement abilities. Aurelia’s illness is degenerative and there is no cure.
To make matters worse Tracey’s husband has been battling an illness called Acromegaly and a tumor in his brain. This has left him unable to work during his treatment, placing additional financial strain on the family.
Tracey has said during this difficult time the Algester State School community has banded together to support the family. “There’s been so many families reach out and provide meals and give us vouchers to do things with the kids and make some memories.”
“We’ve been so grateful because it’s been such a tough time for us.”
A special SOS nomination
The Hifo family was nominated for a 96five SOS by Algester State School Chaplain Wendy Browne. Tracey spoke of how Wendy has been able to get the school community to pull together to support her family. “Chappy Wendy has orchestrated all the support, as well as providing support for Aurelia and Amira at school. She gives them reassurance that they’re not alone. That’s been really helpful for all of us, because even though we’re going through a tough time, it’s shown that there are people out there who genuinely care.”
Chappy Wendy say that the school community has been nothing short of amazing in helping Aurelia and her family in this battle. “Her classroom teacher was visiting her in hospital, giving her gifts and making sure she had communication with the class. The teaching assistants also visited her in hospital, as well as helping out over the school holidays by taking her to the movies.”
“It’s been a really good example of the fact that we don’t do life alone and that we need each other.”
Through some generous sponsor’s the 96five SOS program was able to provide the family with a number of small gifts to encourage them as they spend precious time with Aurelia before her condition deteriorates further. They received a 2 night stay at the Paradise Resort on the Gold Coast, a $100 Coles voucher to assist with expenses, a Fun House Arcade voucher and some movie passes.
Tracey says that the SOS gifts and the community support help her to not feel so isolated. “We’re so grateful that people care enough to make a difference for us, and help us create some memories.”
“We don’t really know what tomorrow is going to hold.”
The family are currently in need of a vehicle that can accomodate Aurelia’s special wheelchair. If you’d like to help the family out you can make a donation at their GoFundMe page.
Check out the audio of the SOS call which was broadcast live across Brisbane on Thursday morning. 96five’s Sam Escobar and Duke The DJ Dog surprised mum Wendy and Aurelia’s whole class at Algester State School.
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