’Future unknown’: Gympie teen fights rare disorders
LIFE for 15-year-old Enosh Hartwig is vastly different from a regular teenager's.
Thanks to a rare brain condition, auto-immune encephalitis of the brain, as well as dysautonomia (which impacts the nervous system) mean the Gympie teen is intellectually impaired and can't regulate his body temperature.
This means he cannot swim, go outside in the sun or the cold, is unable to stand for more than two minutes without blood pooling in his legs.
All of which means he is in uncharted territory.
"The long-term future for Enosh is unknown," mum Sonia Hartwig said.
Enosh's disorders, and the need to seek treatment in Brisbane for one week out of every month, led to the Hartwig family to move from Rockhampton to Gympie.
This cut their trip from "about two days" to a few hours, but opened the door to new challenges.
"It's our first winter in Gympie and his temperature keeps dropping … despite having thermals and winter pyjamas," Mrs Hartwig said.
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And then there were disruptions caused by the pandemic, which caused the Hartwigs to turn away carers given the exposure risk and have the family take on the roles instead.
"We have to keep Enosh safe," Mrs Hartwig said.
Fortunately, she said, they were not on their own all the time.
The challenges were alleviated through the help of the South Brisbane Ronald McDonald House, which had become their home away from home over the past few years.
Mrs Hartwig and her mother are guests at the house one week out of every month while Enosh has treatment.
Mrs Hartwig said an offer had been a saviour in several ways, not the least of which was financially - she estimates not having to rent in Brisbane every trip has saved the family about $21,000 each year.
"It's one less thing we have to worry about," Mrs Hartwig said.
They have been part of RMHC since 2016, and it is a connection "pivotal to our wellbeing".
"We can stay connected as a family.
"They have been very supportive.
"We don't know what next year's going to bring."
A RMHC spokeswoman said the charity said, on average, there is a $1,265 in savings per family on accommodation, parking, food and laundry during a House stay of 11 days, and 18,000 hospital bed nights were avoided as a result of the hospitals being able to discharge patients earlier to the House, resulting in approximately $31.8 million per annum of reallocated resources for partner hospitals.