NEW UPDATE AT THE END 

Hi, my name is Alexis, and I’m reaching out for help to fund a life-changing surgery that will help me manage a rare and challenging condition known as Fowler’s Syndrome. This condition affects my ability to empty my bladder properly, causing chronic urinary retention and severe discomfort. Despite trying various treatments, my doctors have advised that a urostomy is the most effective solution to regain my quality of life.

A urostomy is a surgical procedure that will help me bypass the need for normal bladder function, giving me the chance to live without constant medical interventions and the daily struggle of managing my condition. This procedure is not only life-changing, but it will also provide me with much-needed relief from the pain and frustration that comes with this rare condition.

However, the costs of surgery, post-operative care, and necessary medical supplies are significant. I’m humbly asking for your support to help cover these expenses. Every contribution, no matter how small, will bring me one step closer to a healthier, more manageable life.

Thank you for considering supporting me during this difficult time. Your generosity means the world to me

UPDATE;

Since starting my go fund me my condition has worsened a lot. My specialists have admitted that currently I am high risk with the amount of treatment Ive needed over the last few months. Back in April I started getting back to back infections ( pseudomonas ). This HAS NOT GONE AWAY and keeps coming back. Everytime I get better it slowly comes back. This has restricted my life at times when I’m hospital. Although originally I was saving for surgery this is no longer an option with my current ongoing life threatening issues. 

The current funds I had saved have gone towards the following;

• Private Emergency department fee ( $300 each time ) 
• Catheters ( $60 each ) 
• Specialised bladder wash outs ( $30 ) 
• Transport when unable to drive 
• Medication which isn’t on PBS list 
• Catheter supplies ( tapes, bags, flip flows etc )  
• Out of pocket scans and tests

I appreciate the generosity of everyone who has donated and shared my go fund me. 

So what’s next;

Currently the future is uncertain meaning anything can change at any moment. My

Urologist wants me to get a second opinion privately by an urology who does reconstruction surgeries ( urostomy ) to review my and check if there is anything that my current and interstate urologist might have missed. 

I am working with infectious diseases treating all infection that I get significant symptoms with and any other issues I have that they can help 

Haematology has been very good with support and checking in. Though no one advised them about my new clots while on celexane injections everything else isn’t too bad she’s worried about my haemoglobin due to on going complex haematomas. 

Intestinal failure team have referred me to a colorectal surgery to discuss an ostomy for my bowels as there’s no other meds or tests that will benefit me at this stage being 1.5 years which I could pass a stool. This would mean potentially needing a double ostomy meaning double time under. 

What am I raising money for? 

• Ongoing catheters ( $120 a month ) 
• Bowel press / microlax ( $30 a week ) 
• Any private hospital costs that might pop up ( I seem to get better care there ) 
• Transport to appts / hospital when unable to drive
• Urologist fee ( $400-600 ) 
• Genetic testing ( $1500 ) 
• Catheter supplies; bags, tape, flipflows ( $30 a week ) 
• Specialised bladder medication / wash outs ( $30-60 a week ) 
• See a naturopath 

I appreciate the love and support from everyone ❤️ thanks