An Iranian migrant and a person with Friedrich Ataxia

Bella is a 30 years old HR manager who migrated from Iran 10 years ago. Although she enjoys a happy and healthy life thanks to NDIS, her journey wasn't always smooth.

When I was 15, I remember the first time I couldn't dance like I used to. My feet seemed to not know where to go. Walking and balance became harder day by day. For months, I kept these little body twitches to myself. When I fell I was silent... until my mum started noticing. I didn't really want her to notice. Her noticing that something was wrong with my body meant that something was actually wrong with my body. I didn't want to accept it.

Fast forward a few months, we land at the footsteps of a cardiology clinic and somehow I'm diagnosed with 'Rheumatic Heart Disease'. To be honest, even my nonchalant 15 year old self knew that the problem wasn't exactly with my heart, but my parents keen to 'cure' me accepted any diagnosis with a definitive treatment. And that's how I was given intramuscular penicillin injections for months as treatment for my deteriorating balance.

Noticing that my balance was continuing to deteriorate my parents decided to prod further. This time we visited a geneticist with a specialty in neurology. My DNA was sequenced and sent to an advanced laboratory in Germany whereby the diagnosis of Friedrich Ataxia was confirmed.

Friedrich Ataxia is a rare disease due to low amounts of this protein called: Frataxin.

Although researchers are still trying to understand the exact role of this protein, it seems to have something to do with iron levels within the mitochondria (AKA power house of the cell). But Friedrich Ataxia doesn't give you anaemia or anything like that. From around puberty it starts affecting your nerves, heart and a bunch of other organs. Thankfully, it is not fatal on its own but it makes life pretty darn difficult.

Since my diagnosis at 15, I have struggled with my balance and coordination. My specialist doctors describe the symptoms like how your body behaves when you're drunk. Of course, your mind is certainly fully sober which makes this condition truly difficult to live with.

As an adolescent, I can clearly remember the denial and the grief that I experience from my diagnosis.

I felt that my life was truly over before it began. These internal struggles worked to shatter my confidence. I tried to hold hope that one day there'll be a cure but what if there was never going to be?

Amidst these internal struggles, living in the third world country of Iran, people's perceptions towards my disabilities weren't kind. I remember going out with my friends and I would hear people mutter "Poor girl! Thank God we're healthy" or once in a while an old religious lady would walk to me and pray for me that one day I would walk.

I started going out less and declining offers to experience new things. I was truly afraid of what people would say. My internal self-depreciation had tripled because of people's looks, words and demeanour towards me.

One thing that I was truly blessed with in my life is having the most caring and a fighter mother.

Knowing that I have no future in Iran, she tried every single path available to get me out of Iran. And so that's when Australia rose as the country that would welcome us in open arms.

My journey initially in Australia was not smooth at all. Upon migrating as an International Student, I struggled really hard to make Australia home. At the time it seemed that the Immigration Office was truly against individuals with disabilities. However, with many challenges and obstacles I managed to obtain permanent residency.

Although, I was truly grateful to live in a country that I was accepted and supported by society, at home I still struggled to receive the care that I needed. I was wholly dependent on my mum to fulfil my activities of daily living like showering and dressing to name a few.

My life started to change when NDIS was introduced. Having all of my care coordinated and pre-determined helped immensely with my needs and allowed me to live a life that everyone else does.

We are always excited to hear your stories too. Send us an email at support@beeyacare.com.au

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