Help Ruth with funding disability equipment

Hi, my name is Ruth, and I am a passionate musician who plays cello and is also a woodwind doubler, with the dream of one day becoming a professional musician. I also have a medical condition called POTS (Postural Orthostatic Tachycardia Syndrome) which in summary means that my body can’t regulate my vitals (heart rate, blood pressure, etc) when standing. For me it causes extreme fatigue, and can lead to syncope (extreme dizziness resulting in fainting/passing out).

I was diagnosed with this condition in early 2018, when I noticed I had some cardiac symptoms after a heart procedure, and quickly realised it was POTS, as it is a common comorbidity with my other medical conditions. I was one of the lucky ones as it can take people years to get this diagnosis.

At first, it wasn’t a huge adjustment as I managed the condition with some lifestyle changes (it is the weirdest feeling when a cardiologist tells you to have a high-salt diet!). I managed to continue with my passion of music, being heavily involved in community orchestras, local theatre companies, high schools, etc as I was pursuing my goals.

However, my health took a drastic change at the start of 2022. I was playing cello in a local production of Sweeney Todd when in the middle of the show, I had sudden extreme dizziness, but managed to hide it until the end of the show (of course I’m incredibly stubborn) and asked for an ambulance when the show had finished that night. Throughout the months that followed, I continued to have severe dizziness, and kept pushing through until it got to the point where my body was physically stopping me from going to rehearsals, so I had to give in.

Later on in the year, after many tests and specialists appointments, I had been diagnosed with vestibular migraines which was caused by a new medication that I started. However, when I came off the medication, my POTS never recovered and it became my new low baseline of health. There were other health complications that happened that year, which to this day are still ongoing.

Since the middle of 2022, I had slowly been making my way through every possible treatment for my POTS, until there was nothing left for me to do, and had to accept that this was my new reality. I had to stop all of my music goals, the rehearsals, concerts, cello lessons, everything.

It was at this point when I realised that if I wanted a better quality of life, I would need to apply for NDIS. Fortunately I was no stranger to NDIS, as I have 2 brothers that are on the scheme, and my superhero mum who knows the ins and outs of the disability world. So I first applied in August of 2022, thinking that it wouldn’t be too difficult to get accepted. Boy was I wrong.

Since mid 2022, it has been an ongoing fight with NDIS, spending thousands of dollars on reports from my specialists and allied health team, only for NDIS to keep moving the goal posts and deny me each time I submit more paperwork. It has now got to the point where there is nothing left for me to submit, my doctors are speechless and are clueless on how to help me. I am currently going through the appeals processes of NDIS, and am likely to require a tribunal hearing at AAT (the Administrative Appeals Tribunal). At this stage, I still have no clue if/when I’ll be accepted.

This is where I really need your help.

Currently I am mostly housebound, except for my once-a-week grocery shop and multiple medical appointments. My mental health is greatly suffering, and I am in desperate need of vital equipment that would drastically improve my quality of life. In theory this is what NDIS is for, but as you can see, it isn’t that straight forward.

I am hoping to raise $5,079 to purchase the following:

I specifically chose these 5 items as they will make the most impact with the lowest amount of money. There are so many more items that would drastically help, and any further donations beyond my target would be used accordingly with my health team's advice.

As you can see, I have a really important need for all of these vital things, and I could really use your help. It would mean so much to me if you could share my story and this GoFundMe page, so I can one day hopefully return back to playing music and interacting with the world and the community again.

Thankyou for reading my story