WE WANT HER WITH US

KooLulama Chabane is 9 years old. She was diagnosed with Aplastic Anemia in February 2019. Before her diagnosis she had a history of recurring nose bleeds. How we got to find out of her condition was through what we can call divine intervention. In December 2018 when gathered as a family we headed to the graveyard as is customary around that time to pay respects to our deceased loved ones and offer prayers. During prayers Lulama wandered around the graveyard and came upon a tombstone of her great-great grandmother which had been re-done, she moved a slab that fell on her foot. We heard her scream, rushed to her; saw her foot broken and swollen. We rushed her to hospital. When she was in hospital, she started bleeding, the Doctor who was treating her decided to do further investigations having learned that she had a history of nosebleeds. Convinced that there was something causing the nosebleeds, he requested for further tests. Her blood levels were found to be dangerously low and the Doctor ordered a further biopsy. Her biopsy was referred to specialists and in February 2019 the results came back; she had Aplastic Anaemia. We were told the dreadful news that the condition is rare and does not have a cure, as treatment she would get blood and platelets transfusions, to keep her blood levels at acceptable levels. We were devastated. We started doing some research to familiarise ourselves with the condition, to be in the best position to care for Lulama, as a family. It was heart-breaking to learn some of the facts about the condition. Lulama heavily relies on blood and platelets transfusions which she normally gets twice a month. Patients with Aplastic Anaemia do not produce new blood cells. She must be regularly hospitalised and each time her blood levels are low, the platelet count is low, she is prone to all sorts of infections as her bone marrow is deficient and her blood does not clot. We have had episodes where Lulama has had bleeding lasting for hours where her platelet count is zero. Aplastic Anemia causes deficiency in all blood cells; white, red and platelets. Due to constant hospitalisation Lulama misses a lot of school which is detrimental to her progress even though she is a gifted student. Lulama herself has been strong and courageous through this even though it is a serious challenge with lots of difficulties. Some of the treatment is quite extreme with lots of side-effects. We are hoping to get a bone marrow transplant for her; a possible cure to give her a chance in life. The costs associated with finding a match and the transplant itself are quite high and we need a lot of help as a family in this regard. Lulama is a beautiful, spirited, happy, cheerful, kind, sincere, brave girl full of fight. She has already faced up to a lot due to her Aplastic Anemia diagnosis. It’s a tough road filled with lots of tears, sleep-less nights, pain and anguish but we are hopeful that she can find the help she needs and be on the road to healing, recovery and remission. We want her with us, surrounded by love.

I am Lulama’s paternal Grandmother. It is important to raise funds for Lulama to give her a chance in life. The funds will be used to pay for her donor search and bone marrow transplant and any further treatment required. The impact will be huge as it will give her a 2^nd chance in life and access to possibilities.