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Fiona's Story

Fiona Zimmermann | South Australia At Home Care Grant Recipient

Two weeks after Fiona’s 18th birthday she suffered a cerebral arteriovenous malformation (AVM). In the midst of planning for her year 12 formal and on the brink of starting her adult life, her freedom was taken away from her.

Growing up on a farm, Fiona has always had a love for being outdoors. When she finished school, her plan was to work with animals.

“That was one of the most heart-breaking things, because that never happened for her…” – Jenni, Fiona’s mother

An AVM is a rare congenital malformation, a mass of arteries and veins that tangle together in the brain. Without a head scan, these often go undiagnosed until they rupture. Unfortunately for Fiona, whilst there were few symptoms, her parents never would have guessed that the cause was something so dire.

“We never in a million years would have thought it was this. I have issues with some of that because of the fact that I didn’t pick up on it straight away. 3 years later, I still blame myself.” – Jenni

When Fiona came inside after being in the garden, complained of a headache and vomited, her mother Jenni decided that they would both stay home from church that day. At first Jenni assumed Fiona had a migraine, never imagining that it could be something more serious. As Fiona’s condition worsened Jenni realised it was something much more severe and called the ambulance. Everything from here on was a blur.

“One morning everything was fine, and in that one moment, your whole life is turned upside down. You end up living at the hospital.”  – Jenni

Fiona was taken to hospital in Adelaide by helicopter where she underwent a 12 hour operation. The AVM was 3cm by 5cm and caused a significant bleed on her brain. After the surgery, doctors told her family that they were not sure whether she was going to live or not.

“She has suffered a lot more than other people would have; there are a lot of people that have just died, so we feel as though she’s here for a reason.” – Jenni

With their lives turned upside down, Jenni and her family are trying to retain some form of normality. Jenni, Fiona, Fiona’s twin sister Leah and brother Joel have moved from their property on the farm to rent a home in the Barossa Valley which is closer to medical treatment and therapies.  Leah is working locally and has a boyfriend, while Joel works from home as a sculpture artist.  Whilst Jenni loves to see her children grow and succeed, it is a difficult reminder – a stark comparison between the life that Fiona is living, and the life that she should be living.

“I have such hard feelings about that because I think; this is where Fiona should’ve been. She should be out socialising but she doesn’t have that kind of life.” – Jenni

Jenni first heard about the Youngcare At Home Care Grants through a local support agency, Carers and Disability Link, two years ago. To date Fiona has been the recipient of two Youngcare At Home Care Grants. In the first round her family applied for funding for exercise physiology, occupational therapy and hydrotherapy. The most recent round, Youngcare was able to bridge the gap that presented itself with Fiona’s first NDIS package, providing funding for therapeutical support.

“We still have hopes that she will walk by herself, even if it is assisted. That is the aim and through this funding it gives us that extra opportunity to have a professional working with her.” – Jenni

Without the Youngcare grants, the family was trying to work out how best to spread their limited NDIS funding over the year. This meant that there would be less opportunity for Fiona to work with specialists and there would have been greater stress placed on her carers and the family to fund necessary therapies. At such a young age, there are still improvements happening even though they are very slow, and thanks to the generosity of Youngcare supporters, Fiona is able to continue progressing.

“It’s been amazing to have that funding available and to know that for this year I don’t have to worry about paying for these therapies. To know that I don’t have to worry about this is amazing!” – Jenni

At 21 years of age, and three and a half years into her condition there are still so many ways in which Fiona able to benefit from rehabilitation. Youngcare is pleased to have been able to provide vital funding for therapies that were not covered under the NDIS. Now, Fiona is being given every opportunity available to help her progress.

“I am so appreciative that there are people like you there, who are willing to invest in Fiona’s future. You’re investing in her life. It’s not just money.” – Jenni

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