Hello world!

My name is Daberechi Amaechi, I have Sickle Cell Disease and I'm a mother of three beautiful girls. I am of Nigerian heritage and I grew up in southeast London with my mum, dad, and four other siblings. I was the only one out of five children who had sickle cell, and as a child, I had no clue what it was. I knew something was different about me but just couldn't figure it out. I would always have stomach pains, feel tired after walking for a while, faint in school, and struggle to keep up with physical exercises. I was significantly slimmer than my siblings and peers and occasionally appeared to have slightly yellow eyes. At one point, I thought I was adopted from the dumping ground, (Tracey Beaker, if you know, you know!), because I was treated quite differently from my siblings. For instance, if they were playing in the snow outside, I'd be in the window watching them because I wasn't allowed to get cold. I would always be told to drink boring water as a child while my siblings sipped on Ribena and juices. I'd have to eat plenty of greens; I mean, the ratio of spinach to rice and chicken was illegal, and it was apparent that this wasn't always applied to my siblings. I'd always have to wear thick tights and turtlenecks under my cute dresses while my sisters were in cute frilly socks with their dresses. Besides the painful belly aches and anemia, and the psychological battle, Sickle Cell as a child wasn't FUN!

The discriminatory acts which, I now know, to be acts of care and prevention from my family were always mind-boggling to me and led to resentment and acting up for attention due to lack of education. This acting up spiraled out of control and affected my school life and home life, and let's just say it took a turn for me in my mid-teens as I ended up living alone, understanding my illness, and going through many trials with no support.

The discriminatory acts which, I now know, to be acts of care and prevention from my family were always mind-boggling to me and led to resentment and acting up for attention due to lack of education.

My sickle cell got worse as an adult. By then, I understood what was going on with me and had ways of coping, but still, sickle cell proved to have the upper hand at times.

Fast forward to now, I feel that many people with sickle cell are misunderstood, lonely, not by choice but by circumstance, depressed, and mentally checked out. Fun is like a bus that drives off when you put your hand out to stop it. Sickle cell can play tug of war with your joy and play kiss chase with your pain. With the lack of education and awareness, making changes to improve things can seem like a pig flying.

And now as an adult having a child with sickle cell I want to rewrite that story and as she grows she'll know she deserves to have FUN, she'll be Educated about her condition and she'll get all the Support she needs. SickleFES hopes to implement change in various ways to make the life of a sickle cell sufferer even better, and in the hope that others don't feel like that confused, sad, and frustrated little girl.