Hi, my name is Sang Ah (Jamie) and I have been struggling for a long time with numerous health issues and doctors could not identify a cause.

I was finally diagnosed in November 2025 with a neurological disorder called 'Severe Chiari Malformation Type 1 with Syringomyelia'.

My journey started 20 months ago when I developed a chronic cough that was accompanied by severe headaches. I regularly saw my GP and some specialists and was sent for multiple blood tests, and multiple scans on my nose, throat and lungs. The results at the time was inconclusive and I was treated for reflux, upper respiratory cough syndrome and vestibular migraines all of which results in no improvement to my symptoms or condition.

About 8 months ago I noticed that my balance had gotten worse over time and my 'furniture surfing' around my home turned into not being able to walk in a straight line and not being able to move around at work without bumping into things, people and having colleagues ask if I was drunk. This has been an extremely embarrassing development as I did not want to be in public walking how I was. I also started to miss a lot of work as well as the walking, and the standing was triggering the severe headaches and coughing excessively in public was also bothering colleagues and customers.

I decided that because I was unable to walk properly and was missing so many days at work, that I should seek help from different medical practitioners and investigate my condition and worsening symptoms from a different angle. I came across a specialised medical practise called 'The Canberra Dizziness Clinic' and was seen by a wonderful physician there who asked me more questions, ran more tests and seemed to consider all of my symptoms holistically than I have had any medical practitioner do in the last 12 months. This resulted in me being diagnosed with Cerebral Ataxia and referred to a neurologist.

By the time I was able to see a neurologist, my symptoms had progressed to me not being unable to walk without a cane to steady me, and in the last 2 months my vision has intermittently started to blur. I've found it harder to focus on things and it has become harder to drive safely. It was at this time that I decided to stop calling in sick to work and request an unpaid leave of absence as I felt for my direct supervisor who has been taking the heat from management about my poor attendance.

Once at the neurologist I was sent for another battery of tests for bloods and further scans. Upon returning to get the results, I was advised that they have discovered the cause of my worsening symptoms and diagnosed me with 'Severe Chiari Malformation Type 1 with Syringomyelia'. I learned that this disorder was likely present since birth and asymptomatic until recently when I was pregnant and gave birth. I was advised that the physiological changes that happened to my body during that time could have caused this disorder to worsen. The disorder essentially means my cerebellum has malformed and grown/been pushed into my spinal cavity, which has also created cysts within the spinal cavity.

The neurologist has now referred me to a neurosurgeon in Canberra Hospital to organise a treatment plan that will likely result in brain/spine surgery, followed by an extensive recovery period. I am waiting to hear more about a timeline for when this is likely to take place, but expect it to be within the next 2/3 months.

This condition has taken a severe toll on my personal and professional life and has caused significant financial strain on my immediate and extended family. The best-case scenario will still mean months of no income and continued medical expenses. I have been advised that the surgery itself is major and carries significant risk, and worse case scenarios do not look good for my 2yo son's future.

I hope if you're still reading this you could find it in your heart to assist me and my family with medical expenses and the expenses of raising a child whilst significantly impaired. If you're unable to donate, sharing this page will also go a long way to help me and my family.

Thank you,

Jamie