A life with Sickle Cell Disease MY STORY I am Wakirwaine Annet, aged 27, Ugandan by Nationality, working with Machnik Sickle Cell Foundation. I am grateful for this Foundation because it has brought back hope in my life which I had lost when I realized that I am Sickler. I was 11 years in primary seven when I realized that I was having sickle cells, it was hurting me day and night and I always asked God why me? But I never got any answer for my question. I could fall sick every month with too much pain in the joints and almost the whole body because I couldn’t walk or sit when in crisis. Since I was falling sick every month it was very hard for my parents to pay the hospital bills, so my daddy advised my mother to go and do nursing course which my mother did and she was the one to treat us because we are three in the family who are Sicklers. My mother was hated by all relatives because they thought sickle cell was not a disease but witch-craft brought by my mother, but my Daddy never left my mother because he knew that sickle cell disease is a group of disorder that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body, for my case it was bad experience because am a twin but my twin sister is normal so people always asked a lot of questions why the other twin was normal? I went through psychological torture because of peoples words, one day my grandmother called me a dead working body and advised my daddy not to pay fees for me because she claimed that I was going to die any time, even at school it was hard for me especially when fellow students talked ill about me, they told me I was going to die at eighteen years of age, from this time I hated school and I never wanted to go back to school but my daddy told me that I will not die , that he was going to take me to Mulago hospital for better treatment which he did. When I reached there, I realized that I am not alone so I learnt to take care of myself. After my graduation in 2016 I looked for a job but I failed to get one , Even people who offered me jobs , they sent me a way in a period of two months since I was not always at work whenever I was needed because I was sick so I gave up on jobs. In 2019 I fell sick and was admitted in Entebbe General Hospital and one Nurse advised me to be going for Machnik Sickle Cell Clinic every Thursday which I did and my health is good, in the clinic I found Mr. Machnik and his wife Carolyne Machnik who counselled me, showered me with a lot of love and even offered me a job at Machnik Sickle Cell Foundation, I no longer fall sick often as it used to be. Thanks, Machnik Sickle Cell Foundation. In Machnik Sickle Cell Foundation I have learnt a lot of skills like shoe making , shampoo making , liquid shop and making bags, I would advise all Sicklers to joint this foundation, to go for counselling services at Entebbe Sickle Cell Clinic, to go for (CBC )checking the blood level monthly, taking the drugs as advised by doctors and checking for Hb, to those who are ready for marriage, kindly test your partner before getting married , this will reduce on the number of children born with sickle cell. MOTHER WITH FOUR SICKLER CHILDREN I am Anna Grace and out of the ten children from my mother and father, I am the only one who bore children with sickle cell disease. I have four children with sickle cell disease; Peace 16 years, Jacky 13 years, Joyce Mayer 9 years and Simon Peter who are all under Machnik Sickle Cell Foundation for medical care and treatment. I discovered this lameness (sickle cells) with my 1st born at the age of 9 months when at that time she seriously happened to fall sick. I believed this not deliberately when I found out the results to be positive from Calif clinic. That time I threw off the results and went back home up set. By evening, the child’s condition was worse until I went back for admission in that very clinic almost for a week yet with the other two children of which later one whom we found also positive (sickler). Life looked difficult, confusing and not lovely because after a short time would find a child sick. I saw losses come my way because I was only spiritually and physically blind. Why? My aim was to get a job and lay down my plans as I had laid for my future. Not literally knowing that this was God’s will upon my life and family. Oh one day as I thought deep and meditated on how best to run this life I very well knew that I could no longer come out of it. I decided to put God first in everything because I knew and believed that I will never fail if I held onto Him. Sincerely as the successful ones, I ever seen so I embraced His life in my children wanting to live a happy mother and a family. I worried off because I knew nothing I could add/delete from it but then I must seek the joy to live and love it. We were following instructions from doctors also friends and striving to do my part as a mother with love and to keep a happy family. I had another girl and her case though was showing no signs but should could go on with the daily food folic acid tabs from the time she was 1 ½ year(s). Her disturbing part was stomach pain and sometimes malaria. Then I had another baby boy whom we discovered with the disease at the age of 1 month being a serious time when the boy was admitted in Entebbe Regional Referral Hospital in the sickle cell clinic of Machnik Sickle Cell Foundation. Yet at knowing all this, the stronger I became as a mother. I became a child too because I would always want to keep the love. MEET AMEGO PEACE My name is Amego Peace aged 16 (sixteen). I thank God for who I am since I discovered that I had this lameness (sickle cell disease) in me for God knew me before I was born. I also thank my parents Mr. & Mrs. Okii for their care and love for me in every situation that I am not worried of anything with them and I am grateful to them that I even go to school and that I go for medication as recommended by the Doctors of Machnik Sickle Cell Foundation Uganda. I also feed on a balanced diet most especially, fruits and vegetables as recommended by the doctors as well as taking a lot of fluids. I participate in co-curricular activities like playing net ball, wood ball and I also dance because I am just like every healthy people because I can also do what they do. I conclude by sending my regards to all doctors and the management of Machnik Sickle Cell Foundation for their work because ever since I joined them, my health stability has improved and I am very thankful for all that care for we sicklers and I advise all sicklers not to feel bad of who they are because we are all the same. MEET AKELLO JACKIE AJOLLO I am Akello Jackie Ajollo aged 13 (Thirteen). I am a sickler and thank God for who I am since I discovered that I was a sickler. I thank God for my family and my life for He has a plan for me. It is not a worry to me for God knew me before I was born on this earth. I also thank my parents for their efforts of care and love upon my life and now that I have grown up, I look forward to see that my life is better day by day with the help from God and my parents. It may look difficult to other people but it is not because I accept what is upon my life. It only takes a step of love in my life. Following every instruction and teachings when putting it in action (doing it). I get medication monthly or when necessary from ERRH under Machnik Sickle Cell Foundation. Thank you for the love and care upon us. Swallowing my daily food (Folic Acid Tabs every day and others were necessary). Eating a balanced diet, drinking as much as I can (juice and water as major drink) with this I can manage to make my life better every day with the help from God. I can do everything as a human being for example education and I am in form two this 2020. I am Turyanabo Amina having a sickler child called Diana Catherine Nakazzi aged 2 years. We stay in Abaita-Ababiri Entebbe. When my child fell sick, I took her to the hospital for check-up and to get treatment, then I was told she had no blood and I was advised to first check whether she had sickle cell disease. At first I made a screening test which was positive and then they referred me to Machnik Sickle Cell Foundation Clinic do to a sickle cell confirmatory test. I waited for the results with a belief that my child does not have sickle cell disease. To my surprise, the results were also positive, they confirmed that my child had sickle cells. I could not believe that she was indeed a sickler. I shade tears because I had never had of any one in my family with that disease and because of the belief among people that sickle cell patients don’t grow. I was scared that my child was going to die. I was advised by MSF doctors and counsellors, that I need not to worry, they were going to manage my child’s disease and offered free medical treatment and care. They told me that I should let the father of the child aware of our child’s health status and that I needed to bring my daughter to the MSF Sickle cell clinic on the prescribed return date for review and treatment. When I met the father of my child, I had to tell him as the doctors advised me. This was the worst moment in my life ever. His attitude and reaction towards us changed, he abandoned us, and left us in the house which we were renting, and left us hanging without anything. I saw myself alone with no one to run to. My child fell sick often with no one to help. She needed proper management, feeding and everything. I didn’t have where to work and without money to pay for rent. I was filled with bitterness with no hopes of regaining my strength. Life became too difficult without money, being unemployed. I tried to search for any kind of job which was all in vein. I started washing clothes for people to get some money to buy food for my child. Then the landlord started demanding money for rent yet I had no money to pay. I was there for about a year without paying the rent. The father of my child was not making any calls to see whether all was okay. I was admitted around 4 times in the hospital and I had no help. Whenever I tried calling him, he would block my calls. I was only helped by my fellow parents at Machnik Sickle Cell Foundation (MSF) whenever I came to receive treatment from MSF Clinic. After a while, he called and asked why I was calling him and I told him the child was admitted and he told me to look for jobs which was difficult for me because when people found out that a had a sickler child, no one could accept me knowing that I would be absent at work always because the sickler children are always sick. I tried to look for people who needed house maids but everyone could not accept me because of my sickler child At that exact time, the landlord threw me out of the house since I had defaulted for so many months without making payments to him. I had nowhere to go with my child, no one was willing to house us and decided to go at my church where a merciful lady took me up and gave me where to stay. There, a friend of mine gave me some little money to look for another place to rent. I joined the MSF program of skilling sickle cell patients and their care takers with hands on skills and I learnt how to make hand crafts, shoes, bags, baskets, liquid soap and shampoo but the problem right now is that, I don’t have capital to start making them and sell them to get some money. I call upon any one who can help me with my child start up some small business from the skills I learnt so that I can be self-employed as well as being able to look after my child and myself. My appreciation goes to the Founders and all staffs of Machnik Sickle Cell Foundation for the free medical care and treatment they give to all sickle cell patients and the free hands on skills trainings they offer to us. They still need more support/donations so that they are able to provide to us. I advise my fellow parents with sickle cell disease and patients to love and care for their children and not to feel bad that they gave birth to them because these children are a blessing from God and they are normal like the rest.