Help fund my sister’s surgeries

Product Description

Australia

Supporters

23 February 2025: Hello dear friends and family, this fundraising page is still active, but some information is out of date. We will update this page before the next round of fundraising in 2025.

*Latest update below*

Original 2024 message:

Many of you will know that my sister Lucy has been bed bound for the last six years with a Cerebrospinal Fluid (CSF) leak from a workplace injury in 2018. Before the accident, she was one of the brightest sparks around.

Many of you donated in December 2021, which helped Lucy access surgery to explore a suspicious part of her spine, aiming to locate the leak and seal it. We sincerely thank the kind and generous people who helped make this procedure possible. The surgery itself went smoothly with no complications. Unfortunately, while leaked CSF was witnessed, doctors were unable to confirm the site of the leak and seal it. This is not unusual – CSF leaks are difficult to find. This was the right procedure for Lucy at the time, as she could not move forward without the doctors investigating that section of her spine.

What is a CSF leak and what does it mean for Lucy?

Here is a 40-second video explaining what a CSF leak is. Lucy’s CSF leak means constant, debilitating pain, worse when upright. Since 2018, Lucy has been living with severe and unrelenting head pain, intense noise and light sensitivity, tinnitus, muscle spasms, deep neck and upper back pain, insomnia, memory issues, brain fog, and more. She spends her days in bed with the blinds closed and the lights off. She lives with our mum (Susan) and mum’s partner (Lorender), who cook her meals, do her washing, and help with household tasks. Mum showers and dresses Lucy through some periods.

Last year, Lucy made this five-minute video of her life before and after the accident. Please note, it contains medical distress and images post-surgery and inside hospitals.

Upcoming surgeries

Unfortunately, there have been growing wait times to see CSF leak specialists. The long-term untreated CSF leak is now causing Lucy a range of serious health issues, which include thoracic outlet syndrome, intracranial venous sinus stenosis, and jugular compression. These issues mean that Lucy’s intracranial and upper body venous pressures are continuously rising, causing excruciating pain. If these issues are not addressed, Lucy’s pressure will rise to more dangerous levels, and there will be no chance of sealing her CSF leak (if located).

Lucy’s doctors have proposed a series of six surgeries, four in Sydney and two in Melbourne, with the first surgery on 22 February 2024. The first five surgeries aim to reduce Lucy’s high-pressure build up, decrease some of Lucy’s pain, and prepare Lucy for the sixth procedure: exploratory spinal surgery. Here is a two-minute video with more details about these procedures.

Fundraising for surgeries

Lucy is in a precarious financial position. She cannot work. WorkCover Queensland unfairly stopped funding her medical procedures in June 2020, despite overwhelming evidence of a CSF leak and the support of her former employer and more than 20 treating specialists. Lucy talks about her experience with WorkCover in this four-minute video. Despite five attempts and a serious disability, Lucy has been unable to access NDIS support.

Lucy’s sole source of income is from Centrelink, which does not cover the costs of living for an able-bodied person, let alone the costs of Lucy’s medication ($11,169 per year), mobility aids, specialist appointments, private health insurance (mandatory to access these specialists and covers a small portion of Lucy’s medical costs), medical imaging, surgery costs, hospital fees, and other costs associated with interstate travel and accommodation.

We’re asking for your help

A hard part of being in pain, and caring for someone who is unwell, is asking for and receiving help. It is especially hard in these times, when many people are struggling with the costs of living, and when many important causes are calling for financial aid. But with nowhere else to turn, we are asking friends, family, and others for help.

Some costs have been confirmed and others estimated. If you are in a position to consider donating (once off, or on an ongoing basis), we would be so grateful. Alternatively, if you can help with other forms of aid—accommodation and transport while we are in Sydney, for example—please get in touch. If you’re not in a position to donate, we would be very grateful if you’d consider sharing this crowdfunding campaign with others.

We are trying to raise as much support as possible within the next two weeks and will continue to fundraise throughout the year. This money will ensure that Lucy can pay for her surgery, providing Lucy with enormous relief, and ensuring she is in the best possible position for the final exploratory spinal surgery.

What’s next?

If the exploratory spinal surgery is unsuccessful, we plan to fundraise at a later date for Lucy to receive treatment in the United States, where there are dedicated CSF clinics with specialised clinicians and far more advanced medical imaging machines than in Australia.

Lucy is one the funniest, most passionate, go-getting, life-loving people I know. You can see this in the videos on this page. You can feel it in the people around her. Surviving these last few years has cost Lucy dearly. But she battles on. If you have read this far, thank you. It means so much for Lucy to know people are standing with her.

Every little bit counts. Please get in touch if you’d like to talk more.

Thank you for your love and support.

Alice alongside Mum (Susan), Lorender, and Dad (James)

Update 23 February 2025:

Dear friends and family,

We hope you’ve had good times with loved ones these last couple of months. We’re writing to thank you for supporting Lucy last year, and to let you know how she went and what’s coming up on the horizon.

Updates from 2024

Last year was a really tough year for Lucy. Early on, Lucy’s doctors proposed a total of six surgeries: five surgeries to address the secondary issues caused by her untreated CSF leak, and an additional surgery to explore a potential CSF leak site (at S4–S2), which has been an area of concern since surgery there in 2021.

Our plan for 2025

Lucy’s doctors believe they have identified another potential CSF leak from the November scans. This is big news, as it suggests Lucy might have more than one CSF leak.

Lucy’s doctors want to proceed with the original spinal surgery, looking for a CSF leak in at least two areas: the original area (S4–S2) as well as the area identified in the November scans (T11). There are also discussions about investigating a third potential leak at L3–L5.

This is risky and invasive surgery. We’re trying to find a second opinion on the potential CSF leak at T11 before confirming that addition to the already planned surgery at S4–S2. Lucy needs to have some other procedures beforehand, including an endo laparoscopy, scheduled in the public health system on 7 March 2025. Once Lucy has recovered from this, her CSF leak surgery will be scheduled.

We’re feeling cautious but hopeful. The search for Lucy’s CSF leak is increasingly critical as her health deteriorates. If the CSF leak surgery is successful—if her CSF leak(s) are located and completely sealed—it would be life-changing. Although Lucy’s recovery will be complex, and she will need further procedures to address her secondary issues, it could be a major turning point on the road to regaining a ‘normal’ life.

Unfortunately, Lucy’s 2024 procedures and post-surgery complications were much more expensive than anticipated, which means we’ll need to fundraise again before her next trip to Sydney for surgery. Please get in touch if you want to know more about costs so far and how we’ve spent the fundraised money. We’ll be back in touch in the next couple of months to let you know more about the fundraising.

Thank you!

Thank you so much for supporting Lucy in 2024. We’re so moved and deeply grateful for your love and support, from your messages of solidarity, homecooked meals, and lifts to airports, to sharing your homes for respite, your incredible donations, and making us laugh when times are dark. It means so much for Lucy and all of us to know you’re standing with her.

We look forwards to being in touch again soon. Sending warmth and hope you’re feeling good about the year ahead.

All the best,

Alice, Susan, Lorender, and James

To keep in touch:

Emily Brennan

5 months ago

$50

Val and Jim Brennan

5 months ago

$200

Anonymous

5 months ago

$50

julianne pulford

6 months ago

$200

Tam Hy

6 months ago

$200

Anonymous

6 months ago

$1000

Anonymous

9 months ago

$100

Henrietta Wighton

1 year ago

$1000

Kendelle Ashton

1 year ago

$200

Ryan Lewis

1 year ago

$250

Andrew Eaton

1 year ago

$55

Anonymous

1 year ago

$100

Christine Steiner

1 year ago

$100

Milly and Jake England

1 year ago

$125

Ollie Lucas

1 year ago

$200

Matthew Fisher

1 year ago

$100

Anonymous

1 year ago

$1000

Sylvia Gunn

1 year ago

$50

Sarah Forbes

1 year ago

$100

Kylie Rookwood

1 year ago

$25

Alice Wighton