Annika, a close friend of mine, has been suffering worsening episodes of severe, life-threatening dysautonomia where the nervous system becomes very unbalanced and Annika goes into cardiac crisis.

You may know Annika Victoria from their YouTube channel where they taught sewing, upcycling and socially responsible DIY fashion projects!

As you may also know Annika lives with hypermobile Ehlers Danlos Syndrome, a disease of the connective tissue and immune system which affects the entire body, as well as a chronic UTI.

In early December they were rushed to the emergency department in a cardiac crisis triggered by the chronic UTI and spent time recovering in a cardiac ward. Thankfully they are stabilising back at home, however we are seeking funding to actually treat these diseases rather than just "stabilise” them.

Dysautonomia, while common with Ehlers Danlos Syndrome patients, is not very well known, and there are only a couple of complex dysautonomia experts in Australia! Unfortunately these are the only people who can really help Annika. Annika is scheduled to see these experts in January and February.

For the chronic UTI they've been on full strength antibiotics for a year, but they still get flare-ups where both the dysautonomia and immune system overreact. Even mild infections like colds can trigger these life-threatening episodes. This has also led to a lot of social isolation to avoid them getting ill.

For this we are also seeking phage therapy to help beat the chronic UTI and overcome antibiotic resistance.

We are seeking funding for:

* Interstate travel to a specialized dysautonomia clinic for a week of autonomic assessment, at least 10K to cover the clinic fees, travel and accommodation for Annika and their parents

* Infection-precaution gear for travelling to interstate appointments as they need PPE to not get infected along the way

* Ongoing appointments with dysautonomia and complex hypertension experts, costing a couple thousands for only a handful of appointments as they are ever expensive. Also needs to cover travel and accomodation for these

* Ongoing appointments with the world-leading clinic in chronic UTI in the UK (about $500 every 2 months)

* Accessing phage therapy at the Eliava clinic in Georgia for UTI, approx ~$5000 and ~$2000 extra if custom-made phages are required

* doctor-recommended wearable 24/7 blood pressure monitor ~$400

* Wearable Apple Watch Ultra for continuous heart rate and ECG tracking, emergency cardiac alerts, medication alarms and a wearable emergency call button

* Full mould remediation of house for ongoing severe allergies/mast cell disease, costing a couple thousand at least

* Recouping costs from the recent emergency hospital visits ~$1000

* Any extra money will go to Annika’s very costly medical bills which are ~$600/month for medications and ~$2000/month for doctors, specialists and allied health visits (this is how much Annika still pays out-of-pocket after medicare rebates, sadly)

I know this is a big ask however Annika has helped so many people in their life, teaching resourcefulness, self advocacy and overcoming challenges. I hope they can get through this and your support is greatly appreciated!