Charlotte's story

On Saturday the 28th March 2020, I was diagnosed with 'Granulomatosis with Polyangiitis Vasculitis'.

I am 12 years old and had always been fit, strong and healthy and was really enjoying my first year of High School.

My illness came on very quickly. After a week of battling what I thought was a common cold, my parents noticed that my breathing had become shallow and rapid. They called an ambulance.

If you remember, Covid-19 was making headlines, and my symptoms were very similar. Although I felt reasonably well, my chest x-ray at Sutherland Hospital had doctors very concerned. I went from Sutherland to Sydney Children's Hospital, Randwick, via NETS in a paediatric Intensive Care Ambulance.

At Randwick, I was admitted to Intensive Care, where I was put on a machine to take over my breathing. My mum and dad couldn't stay or visit me as they still suspected I had Covid-19. 

I was scared. The doctors told me I would go to sleep for a few days, and when I woke up, my mum and dad would be there. While I was asleep, the doctors were working very hard to try and diagnose why my lungs were bleeding and why my kidneys weren't working properly. 

All my Covid-19 tests came back negative.

After two days in Intensive Care, doctors made a diagnosis and started treatment. My immune system needed to be suppressed with a combination of medications. I responded well to the treatment, but my lungs needed more time to repair, so I stayed on the ventilator for 12 days and in intensive care for almost three weeks.

When I was woken up and taken off the ventilator, I met Dr Prai, who explained that I had an extremely rare autoimmune disease. The blood vessels in my lungs, kidneys, sinuses and skin had all been affected. My immune system was attacking me!

When Dr Prai said my recovery could take weeks to months, it was a huge shock to me. I was very weak; I had lost seven kilos and had nerve pain in my left leg. Both of my feet had a condition called "foot drop" so I couldn't walk.

The doctors were optimistic I would walk again, but I was very sad. I had lost my independence; I relied on the nurses and my mum and dad for everything. My hands shook so badly I couldn't feed myself or write or type on my phone. I couldn't understand why this had happened to me.

I wanted to go home to see my brothers because they couldn't visit me due to Covid-19. I wanted to see my cats and my horse, Kobe.

After a month, I was discharged and then had physiotherapy and hydrotherapy every day. I worked with an exercise physiologist. Slowly, my pain lessened, and my mobility began to increase. 

Before I could walk, I started to ride my horse Kobe again. Every day I would try to do a bit more even though it was still painful. I tried hard. I returned to school slowly, and everyone was really supportive.

I still have weekly blood tests to monitor my immune system, even though it's over three months from my diagnosis and initial "flare-up".

I feel so much better now, I have reduced lots of the medications, can walk independently and ride Kobe. He has been the best motivation for my recovery. I visit him nearly every day and ride him most days. I am teaching him to jump!

I see Dr Chaitow and Dr Prai regularly, and we also talk via telehealth. Mum and I speak to Anne, Dr Chaitow's nurse consultant, every week—she has been the best support for me. I love talking to Anne.

I also see my paediatrician at Sutherland hospital every fortnight—she is also amazing, and I really like seeing her. Now all the doctors and nurses at Sutherland know me very well!

My life is returning to normal, but the doctors don't know if or when I will have another flare-up, so they are watching me closely.

I still find it hard to understand why this happened to me; I cannot believe the doctors were able to diagnose and treat me so quickly for such a rare disease. My mum and dad and I will always be very grateful to all the people involved in my early diagnosis and treatment. They saved my life.

For patients diagnosed with a rheumatic disease and their families, further information and support can be found on the Paediatric Rheumatology Network (PRN) website.

PRN is a collaborative initiative of Sydney Children’s Hospitals Network, the Agency for Clinical Innovation (ACI) and Arthritis & Osteoporosis NSW