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Daniëlle’s NMO Story – Watch This Space

Posted by: The Sumaira Foundation in NMO, Patient, TM, Voices of NMO

On the evening of Sunday, 17th January 2010, my mother was putting up a fight with my brothers and I to go to bed while we were chasing each other through the house. We had school the next day; I was 12 years old at the time.

At 4am the next morning, I woke up and my legs were tingling and slightly numb…

I went to the bathroom and fell against the bathroom door on my way back to bed. The noise woke up my dad. He picked me up and put me back to bed. He assured me that it was just a pinched nerve and that everything would be fine in a few hours. At 6 am, I woke up screaming in pain. It felt like my legs were on fire and I could not move them! 

At 10 am, my mom rushed me to our home physician where I was told that I had Guillain-Barré syndrome. We struggled to find a neurologist willing to take my case as I was still a paediatric patient and the only paediatric neurologist in Pretoria was overwhelmed with cases. Eventually a non-paediatric neurologist agreed to see me.

After my MRI showed a lesion from L2 to S3, the neurologist diagnosed me with rapid onset, idiopathic transverse myelitis and admitted me to ICU. I had lost all bowel & bladder control and had no movement or feeling from the waist down. 

I started plasmapheresis the next morning. After I completed the five days of plasmapheresis, I received five more days of high dose IV corticosteroids.

I was so young, so I did not really understand the full extent of what was happening, but I distinctly remember that my neurologist told me that he does not believe I will ever walk again. 

I told him that he did not know my God and added, in a cheeky teenager way, that he should ‘watch this space’.

But the reality was that I was terrified. I was an athlete – the best high jump athlete in my school before 18 January 2010 and now I was being told that I would probably never walk again. 

I was in a wheelchair for one month before I started walking with crutches. I had physiotherapy and hydrotherapy at least twice a day, except for Sundays. I missed four months of school. One day, an odd two years later, I decided that I no longer needed the crutches and showed up to school without them. When I walked into my neurologist’s consultation room, he told me that he really did not know my God and that he never believed that this was possible. 

In 2015, I was in my final year of school with big ambitions of becoming a biomedical engineer and going to study 1500km from my hometown, when I lost the feeling and a lot of strength in my hands. I could no longer write my own notes or do my own homework. No one knew what was causing my symptoms.

I went to an orthopaedic hand specialist who referred me to a neurologist for an EMG. The neurologist immediately told me he suspected something neurological rather than orthopaedic, specifically NMO. He referred me to one of his colleagues who specializes in NMO. Dr. Chris Retief admitted me for a lumbar puncture and an MRI and started IV corticosteroids as soon as the tests were done. He tested for AQP4 antibodies, which came back negative. 

He told me he would keep testing because I have most of the symptoms needed for a diagnosis. He diagnosed me with NMO despite the absence of the antibody.

I was devastated and extremely angry – how could the same God who made me a walking miracle let this happen again? 

I went to the hospital chapel, mostly to tell God how angry I was. I was crying hysterically when I suddenly felt inexplicably calm. God was telling me that this is not my fight, but His.

All over the Bible we read that we are God’s hands and feet, He will teach and inspire through us.

I got up and went back to my room inspired to be God’s hands and feet even though neither of mine were working too well. 

Over the course of the next two years, I had several relapses and experienced a lot of hopelessness. I finished my final year at school and went off to university to fulfil my lifelong dream of studying electronic engineering at the University of Stellenbosch.

In the middle of my final exams in first year, I started experiencing light sensitivity in my right eye. The pain was excruciating and I was throwing up every day for more than two weeks. I went home after my exams and immediately made an appointment with Dr. Retief who admitted to hospital me the next day. An MRI confirmed a new lesion on C3 to C6 and optic neuritis. There was no more doubt about my diagnosis despite the absence of AQP4 antibodies. My dose of Imuran was increased to the prescribed amount and I now had certainty that I wasn’t imagining it. 

The 10-year journey with a lot of ups and down has taught me so much about God, friendship, and endurance. 

By sharing my story at a church camp, I met a wonderful man who makes every part of my life better, we are engaged and hoping to get married next year.

I made friends that will last me a lifetime and deepened my relationship with God to the point that I can no longer say I have life without Him. Despite all the challenges and all the skepticism, I completed my electronic engineering degree within the prescribe time and I am now working on pursuing my biomedical engineering-dream. 

NMO has struck me down multiple times and all the tears I have cried could probably fill a dam, but the tears have made me stronger. The pain has brought me love and perseverance. 

God has promised to one day wipe every tear from my cheek and so I will keep being His soldier, His hands and feet. Spreading hope in a world that so desperately needs it.

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