Story of my Life

I am Nora Molongwe, known as Nora Brown. I am a 36yr old Christian mother, an entrepreneur and a sickle cell warrior. It is my hope to create enough sickle cell awareness to help our children and youths.

 

I was diagnosed with sickle cell anaemia at a tender age of 11 months as mummy told me. Her little baby girl started crying continuously and all she could notice were swellings on my hands and feet. She had to rush me to Bamenda general hospital, watching as her tiny baby girl was going through a roller coaster of pain and agony. It has always been my dream to spread the awareness of the disease and educate people living with the condition by creating a support network for carers and parents of young warriors.

If my memory serves me well, I began to understand about sickle cell at the age of 5yrs old. I was living in Yaounde Cameroon with my mum, dad and grandma. I remember how I started crying of pains in my arms after running around in the playground and my mum was called to take me home. I remember how bad this pain was. My mum would massage my joints with warm water and a towel and she would give me an injection that hurt so much. I remember much later in the day, mum had to put me on drips. 

 

I do not remember if I ever had a 10th birthday party as I was always very sick. All I can remember is how I made excellent results at the Common Entrance Exam and First School Leaving Certificate and how I badly wanted to go to a boarding school. My mum kept saying No, No, No. After a lot of insistence, I was admitted into PSS Mankon in Bamenda Cameroon. I was super excited and went without sleep. As the months went by, my trunk was already full of all the goodies you can think of. Mum always ensured we had everything we needed. My school uniforms were ready until this faithful day, about 2 weeks to the start of school term, I fell seriously ill with a sickle cell crisis. I needed blood transfusion. I was hospitalized for about a month and I began to understand why mum did not want me to leave home. So, my dreams of going to boarding school were shattered. I was not happy but needed to accept it.

As young as I was, I felt trapped in a sickle body that always betrayed me with pain. I could not do Physical Education (PE) without getting tired or feeling pains afterwards. On this faithful day as I ran a race during PE, I became so breathless that I fainted. From that day my school file was flagged, and I was exempted from PE. I felt very sad and cried for days.

 

I was very friendly and pretended to be super confident and strong, but I was covered with so many insecurities. I was tired of being called a sickler, friends always asking me why I am always sick etc. Until this faithful day I asked my mum why I was born this way and that I don’t want to live anymore. That I am tired of being sick. Mummy looked deep into my eyes and went to her room. I guess she was torn apart. The following day she told me to get ready in the morning that she wants to take me somewhere. I was excited, and, on our way, I saw we were heading to CUSSE hospital in Yaounde, where mummy works as a nurse/midwife. I asked, mummy we are going to the hospital. She said yes, I want to show you some people. Mum took me to the sickle cell ward. As we walked in the ward, I saw children with swollen heads, children with crutches by their bed and others with bandages on their feet. The sight was scary. When we left the ward, mummy asked me, do u love who you are now? I answer, “Mummy, I am not sick anymore”. That was the beginning of accepting who I am. These episodes of pain continued into my early twenties until when I moved to London, UK.

After reading and hearing from many people that sickle cell suffers cannot survive a pregnancy, when I found out I was pregnant with my first son, I was torn between two worlds: remain pregnant and go through the ordeals or abort the pregnancy. I was still a young girl wanting to explore more in life. In the deepest part of my heart as I tried to think about it, all I could hear were the words that had been spoken to me: she will not live long, she cannot have a child, she is a walking corpse, all the mockery words thrown at me in school. This gave me the boost to the best choice I ever made in my life. That was keeping the pregnancy. I must say it was the most difficult of my pregnancies. I fought so hard for survival as I was in and out of hospital and I stayed in hospital continuously from the 6th month till delivery.

SCD has taken me to the world of insanity and back, it has kicked me into depression that I have wished for death sometimes. It has pushed me to the point of suicide. It has pushed me so far that at one point, I shut everyone out of my life. My closeness to death were:

  • In 1995, My heart stopped beating and was declared dead. My mummy held my hands as she cried and begged God to bring her baby girl back.

  • In 1999, Continuous swollen legs for 3 months, my legs looked like I was suffering with elephantiasis

  • In 2003, I almost lost my life having my first son. Had to be induced so my life could be saved.

  • In 2012, Bone infection – Osteomyelitis that put me house bound for 9 months

  • In 2015, Recurrent leg ulcers, which I still struggle with today.

  • In 2017, Bone infarction that almost took my life in October. 

  • To add to this list of issues, I also battled with Morphine addiction.

My life has not been easy but I am thankful to the Almighty God for blessing me with an amazing support network. My siblings, my family friends have been phenomenal in always being there for me. But most importantly, I praise God for blessing me with a rock for a mother. Her belief and trust in the Almighty God has been my source of comfort each time mum was not there. She will go to the ends of the earth for me. She was my legs when my limbs failed me, my eyes when painkillers blinded me, and my strength when I was weak. O how it saddens my heart she passed away on the 19th of May 2015 without enjoying the fruits of her labour. She will forever be my icon.

The Voice Of Sickle Cell

Depression is a normal phenomenon they say with any chronic illness. I may battle depression for the rest of my life but one thing I know is that every warrior is my friend and I want to use my sickle cell journey to help others.

I want to be the voice of sickle, I want to motivate and help the sickle children and youths so they don’t go through the same ordeal I went through. I understand crisis will come, infections and complications will take me off balance sometimes but if there are people going through pain, I want to be there to counsel them, be there for them so they can make better choices than I made.

SCD has taken so much from me: 

  • it has taken the men I loved away because they were carriers of sickle cell trait (AS);

  • it has taken job opportunities;

  • it has changed my fashion style, and so much more.

But what Sickle Cell has given me include:

  • Unimaginable strength and determination to live and achieve against all odds.

  • A strong sense of empathy and willingness to always help others

 

Watching my two sickle cell warrior brothers die in the battle field, has made me stronger and stronger by the day. I constantly felt if I should die, I will be letting them down.

In honour of the two fallen heroes in my life, my brothers Enyeku and Munuenge, and my iconic mum, Mrs. Hannah Molongwe, I dedicate this foundation, Emeli's Smile, to them.

 

It is my dream to make a difference in the Sickle Cell community in Cameroon and in Africa as a whole.

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