Moss Vale mother-of-four Kylie Smith was feeding her four-week-old daughter at home when she noticed her baby was going “blue in the face”.
She rushed her to the hospital, where little Laurah-Rose Geenen was diagnosed with polycystic kidney disease and hypertension — a condition which, at the time, Smith had no idea about, nor what it would mean for their lives.
“They never picked it up when I was pregnant, with any ultrasounds or any of the tests, so I was shocked,” Smith told 7NEWS.com.au.
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Now, 21 years later, the reality of her daughter’s end-stage renal failure is painfully clear — as is the financial strain required to keep her alive.
Geenen spends three days of the week in hospitals — hours from her regional home — on dialysis and receiving tests to prepare her for an eventual kidney transplant, for which Smith is a potential donor.
A kidney is not the only thing Smith is willing to give up to ensure her daughter survives.
She has already given up her job to care for her daughter, and regularly swallows her pride to borrow money from friends, or go into debt with taxi companies, to afford the thrice-weekly trips to hospital.
Unaware of patient transport supports available to them, the mother and daughter have been making round trips of up to six hours via public transport from the Southern Highlands to Sydney hospitals.
And with trains terminating in their area at 10.30pm, they sometimes need to take taxis. A one-way taxi trip to Campbelltown Hospital costs Smith $290, and to Liverpool Hospital $450.
“My carer payment is about $1250 per fortnight. My rent is $500 a week,” Smith said.
“I’ve had to scrimp and scrape, owe taxis money because I didn’t have the money, borrow money off people which is terrible.
“We’re left with nothing. I have barely any food in the house … I don’t know how we’re surviving. I don’t know how people do it.”
Geenen began peritoneal dialysis — the daily filtration of blood in the body, which can be done at home — when she was 16.
But, due to painful, sepsis-like infections, she has since shifted to hemodialysis, a process which must be done at a medical facility three times a week.
“It’s extremely exhausting,” Smith said.
When Smith has been unable to afford a taxi, the pair have walked for more than two hours — from Moss Vale to Bowral — to catch a train to appointments.
“It’s just so, so hard — I just sit here sometimes and cry because I don’t want to do it because I’m tired, because Laurah doesn’t want to do it because she’s tired,” Smith said.
Smith has a stoic motto she tells herself: “Just keep on keeping on.”
In a GoFundMe she set up to buy a secondhand car to get to hospital appointments, Smith admitted: “I have held my girl in my arms while she cries and tells me she just wants to die.
“I have watched my girl suffer.”
The physical and financial strain have begun to create other problems, with Smith saying: “The mental health side of it is taking over now.”
Transport support for regional patients
Even though Smith is Geenen’s carer, her daughter is no longer a minor and her medical care teams will at times liaise directly with her — and some of the information slips through the cracks.
When 7NEWS.com.au reached out to Smith, she said she was unaware of the Patient Transport Support scheme, or the Isolated Patients Travel and Accommodation Assistance Scheme available to her daughter.
A South Western Sydney Local Health District spokesperson told 7NEWS.com.au: “We understand travelling to and from healthcare treatments can be difficult, expensive and stressful for people in some locations within our district.
“We have several arrangements available to ensure patients unable to receive treatment closer to home are supported to attend their appointments and receive care.
“Door-to-door patient transport services are available for eligible people and booked by the hospital, with associated costs covered by NSW Health.”
The spokesperson said patients should speak to their care teams to arrange the free transport service.
“Patients may also be able to access the Isolated Patients Travel and Accommodation Assistance Scheme which provides financial assistance towards travel and accommodation costs,” the spokesperson said.
But even now Smith has been made aware of the options available, they face another hurdle after years of struggling and now battling poor mental health.
The IPTAAS application paperwork sits half-filled out on their table and they need to reach out for help and support to complete it.
“I just don’t have it in me anymore,” Smith admitted.
It’s a reminder of the barriers to accessing healthcare support which people who suffer depression and severe mental illness, such as Smith and Geenen, can face.
Australia Psychological Society president Dr Catriona Davis-McCabe told 7NEWS.com.au: “People with depression can experience significant fatigue, lack of sleep, brain fog and chronic stress.
“Without the right treatment, this can lead to a cycle of stronger depressive symptoms leading to worsening physical symptoms until emergency intervention is needed.
“Mental and physical health are two sides of the same coin, and they need to start being treated that way by the government. If people are unable to access services on their own, then we need to bring services to those people.”
NSW Health confirmed help is available for anyone struggling to complete an application, and they can contact the application support team on 1800 478227.
Smith is also still trying to raise funds for a car, for when funded transport services are not available or convenient, and for her own appointments in the hope of becoming a donor for her daughter.
If you need help in a crisis, call Lifeline on 13 11 14. For further information about depression, contact beyondblue on 1300224636 or talk to your GP, local health professional or someone you trust.