Brave face against the dreaded sickle cell

Debra, a teacher at Nyanchwa Girls High School has been branded a wild woman for being so strict with nurses at the Kisii Level 5 Hospital. They call her nyagetiara. By JECKONIA OTIENO Brave face against the dreaded sickle cell Ingrid Maburi is in Standard Six this year despite her rare condition. She has been fighting sickle cell anaemia since birth yet this has not stopped her from living a normal life and hoping to get well and dreaming of being a model in future. On her arms are marks she has acquired over the eleven years of her life due to intravenous drug injections to counter the debilitating effects of the disease. When it started, she would experience joint pains especially in the legs and when she was taken to hospital, the doctor who knew the family history due to the fact that her elder brother had been diagnosed with sickle cell anaemia recommended that she be tested for sickle cell and the test turned positive. Her condition has really affected her performance in school due to the fact that she is constantly in and out of hospital. To Ingrid, the disease has just become part of life since she says she does everything she can just when she can. Says Ingrid: “I can never let this condition let me down because I have to live a normal life as I hope for the best.” School is the best place she can be during the week when the term is on. She notes that her fellow pupils have been her greatest inspiration because they do not pity her but they support her. This she says is the best thing that can happen to any person in pain. “When I am sick and they come to visit me in hospital and home; I find myself being happy and ready to live again,” divulges Ingrid. Her dreams have never been dampened even when the painful symptoms take their toll on her. She wants to be a banker in future and her mother can attest to this. Her mother, Debra Kemunto, says that Ingrid has a flair for keeping coins and souvenirs like pens and beautiful ornaments. Debra observes, “When I am broke, she can lend me a few coins but will never forget until after I have paid back the loan in full.” The other most important thing to Ingrid is her hair which she rarely cuts because it defines her and her hope to be a model in future. Her elder sister Brigit cannot stop marvelling at how she likes posing for photographs. The journey through the years with the condition has not been easy for this little girl. Sometimes she says she can have severe pain which can last for days mostly in the abdomen and the joints. But the family has learnt to cope up with this status because they are regular visitors at the Kisii Level 5 Hospital. Rope skipping is a favourite physical sport that she likes but her medical state makes her feel tired so quickly and it is visible in her face as she sits on the couch and with time she has to lean forward or backward so that the fatigue can go. But she is not a girl to be put down by this since she remains active and jovial with shiny eyes. Her skin is a bit yellow after fighting the disease for such a long time in her life but this is the least of her worries. Her main worry is to stay alive and help spread the message that even with sickle cell anaemia there is hope of people living a normal life. “I know there is a miracle ahead and I believe that God will come through for me, and also our family because my mum has gone through quite a lot and I would like to see her have some peace at last when I get better,” states the girl rather seriously. One other wish that she has is that the amenity ward at the Kisii Hospital be reopened because it was a place where many patients with similar conditions met and shared ideas even as they encouraged each other. Managing the sickle cell conditions has not been easy for the mother, Debra. She says it has made her strong and wily yet also aggressive. She points out that if some things have to change, then one is the casual approach that the government has given the rare diseases like sickle cell. Debra has been through fire. She remembers at one point when schools were reopening and Ingrid was in hospital, her condition bad, yet she also had to be at work. She however advises that due to her long period taking care of the children’s condition, it is necessary to note that those in a similar state have to eat well especially lots of fruits and also use the internet to do a lot of research to know more about the disease. Little Ingrid cannot stop wondering how those who have not gone to school manage. “Do they even know there is a disease called sickle cell anaemia? Or what are they told when the children fall sick from this condition?” She asks the government to do more in terms of educating the public about sickle cell anaemia and also in offering affordable treatment.