My name is Hazna Noor and I started this gofundme page on behalf of my cousin, who is in another country and unable to get the support she needs to save her life. Here's Oksana’s story from her perspective :
My name is Oksana Kana and I am 24 years old. My condition began in 2005, with a small bump on my nose that had a pulse. Of course this worried my family and I was immediately taken to an ENT(an ear nose and throat specialist). He took a small blood sample from my nose and diagnosed me with hemangioma. He told us not to worry and set a date for me to be injected with corticosteroids as medication to reduce the growth.
As a 12 year old, hearing that I’d finally be given the treatment I needed to be “normal” was more than a dream come true. I understood that it would be a painful process but one that I was willing to go through in order for this bump to go away. I was given 3 injections, a quick procedure for what was supposed to be a speedy recovery. Unfortunately, things took an unexpected turn.
At first my entire face felt numb, but I chalked it down to the medication taking effect. Around 15 minutes after leaving the hospital my face began to swell up. It swelled to the point where my eyes shut and when I returned to the hospital the doctor also said that it was just the medication, gave me a heating pad and told me once again not to worry. Once again he was wrong. I was unable to go to school for 2 months due to the swelling and after this period most of my face had deflated. My nose however had nearly tripled in size. A visit to the doctor equated to another excuse and I was sent home with a nose that would impact me forever.
A few weeks later it was decided that I had to return to school and I dreaded it. There was nothing that freaked me out more. I really didn’t want to but I had no other choice so I prayed that God would make it easier for me. I tried to keep my head down but the bullying was endless. Being called ”Parrot nose” and receiving stares had become a daily occurrence. Stares as I walked down the street, going to the shops, walking home from school, visiting relatives. I felt like the freak show everyone made me out to be. Then came middle school, where I realised that I would have to face the problems that I had been facing since childhood but I was determined to change my own mindset. I was determined to be my own rock and keep my head high. To block out the negative comments and although it wasn’t easy God kept me strong and somehow, with God’s strength, I managed to finish high school.
I finished high school in 2013 and started looking for an ENP who could help me. I found a doctor who took an MRI scan because she had never seen a condition like mine before and a week later, I was diagnosed with AVM or arteriovenous malformation.
AVM is extremely rare and is a tangle of abnormal and poorly formed blood vessels. The risks and symptoms develop as it grows. I’ve been losing my sight which is one of the major symptoms and my biggest fear is that I can have a brain haemorrhage if I’m not treated urgently and in the right way.
After 2 years of searching for a doctor that has the ability to perform surgery on my nose and remove the scarring the surgery will bring, I have. The hospital is in Bonn, Germany and my family and I have already raised £10,000 towards my treatment. We are asking for help with rasing another £15,000 towards my treatment.
I need to get treatment as soon as possible because every day I wait the AVM gets closer to my brain and a brain haemorrhage becomes more prominent. The signs are there: I'm losing my sight and my migraines are becoming more and more severe. This treatment will save my life.
I am more than grateful for the help and support my family has been giving to me. Not only have they aided me when the times got hard but they have given me the love I need to continue with my fight everyday until the day when we believe I will be free of AVM forever. Even if you are not able to donate please keep me in your prayers and spread the word!
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