Help Me Step Out of Sickle Cell Anemia

Lukumo Chibilu a 10-year-old boy and Ntambo Chibilu a 9-year-old girl are siblings, who are both living with Sickle Cell Disease (SCD). SCD is a serious, inherited condition affecting the blood and various organs in the body. It affects the red blood cells, causing episodes of sickness, which produce attacks of pain and other symptoms. The severity of symptoms varies from person to person. SCD may lead to various acute and chronic complications, several of which have a high mortality rate.

Lukumo and Ntambo have faced several individual challenges with SCD, which has affected them in various ways. Because of their down times, they are frequently in and out of hospital. Consequently, this gravely affects their regular attendance of school which has been affected by admissions to hospital, outpatient visits and ongoing nursing care. Also affected is their normal interaction with other children and participating in routine childhood activities is at an absolute minimum, having an impact on their normal upbringing experience. The effect of the SCD in their young children has not spared the parents, both the father and mother. Having to spend much time with their children giving care and undertaking innumerable hospital visits for doctors’ consultations and hospitalizations, sometimes one after another has grossly affected the parents much-needed productivity and it has become difficult to maintain normal employment.

Medical science has made huge advancements and it is now possible for SCD sufferers to be cured by the transplanting of bone marrow cells. Lukumo and Ntambo are facing this possibility for a cure with Lukumo having been found with an 100% bone marrow match and Ntambo a 70% match. The current nearest and most opportune location for the bone marrow transplant operation is India. To this end, medical consultations with specialist doctors at the Artemis Hospital in Gurgaon (Gurugram), India have already commenced.

The Chibilu family have so far raised funds towards this cause. The amount raised is United States Dollars twenty-three thousand (US$23,000). An appeal for assistance to raise the balance to meet the total cost of medical care for the two children

Ntambo’s charges are estimated to be higher than for her brother because of the higher cost of transplanting for a non-100% match. As a further result of this lesser match she would also require to stay in India for three months longer for medical attention.

An earnest appeal is being made to your organisation to contribute towards the required resources to meet the shortfall of United States Dollars seventy-eight thousand nine hundred and fifty (US$78,950). It is our hope and belief that you will extend help to this family who have already worked and sacrificed so much in order to help their young children have a full and wholesome life.

At this stage, to commence treatment for the one child would greatly lessen the nursing anxieties and strain of having to manage both children at the same time. The initial plan is that Lukumo, for whom the 100% match has been found in their youngest sibling will undergo the procedure this year while a higher percentage match is being sought for his sister, Ntambo. According to medical precedent, at the current rate of a 70% match, it is likely that Ntambo’s procedure, planned for 2019, will be slightly more expensive.

When resources for at least one child, Lukumo are actualised, the children will travel accompanied by their mother. Another adult will travel with them to return with the bone marrow donor after the transplant is performed. It is anticipated that Lukumo and his mother will stay on in India for three months until he is stable enough to return to Zambia.

The LukumoNtambo Foundation Limited has been set up to assist with mobilising of the resources that will enable Lukumo and Ntambo to undergo the medical procedure which would alleviate the challenges of living with SCD and ultimately heal them of it. The mobilisation of resources shall be an ongoing fervent exercise until both children have received the treatment.

Please note that the request for resources is not limited to finances. Donations in kind or that are directed at a specific budget line for this treatment will also be greatly appreciated.

All donations will be acknowledged and receipted. We attach our registration with PACRA as well as a medical report from the UTH Children’s Hospital. The signatories indicated below are available for any further queries or clarifications you may desire.

Lukumo and Ntambo Chibilu - Living with Sickle Cell Anemia Disease