Help 100 Sickle Cell Anaemia Children in Uganda

DearGlobalGivers

Teso Sub Region, comprising 10 districts and 1 city, is witnessing a concerning increase in sickle cell disease cases, contributing 21% to the national sickle cell burden, which is currently at 13.3%. This substantial figure highlights the significant impact of sickle cell disease within Teso, with data from five sites revealing 2,445 affected individuals, primarily teenagers. Notably, access to statistics from Katakwi and Kumi remains limited.

The prevalence of sickle cell disease is accentuated in areas with high malaria rates, driven by genetic mutations developed as an adaptation to malaria exposure.

Healthcare professionals assert that the disease’s prevalence in the region results from high sickle cell trait frequencies due to intermarriages without prior screening, culminating in sickle cell disease in offspring.

This scenario underlines the importance of premarital testing for sickle cell trait to prevent the birth of children with sickle cell disease.

Data from Soroti Regional Referral Hospital indicates that 826 patients, primarily children under 10 years old, seek weekly treatment at a makeshift clinic near the hospital.

SCOEN is grateful for your genorosity, without your support we wound't have reached communities we ara working with. The previous quarter we have not done much work because of finances, we still appeal for you support. However we have trained the caregivers of this on hygine and sanitation to help the sickle sick children.

Networked with the office of the DCDO, Bukedea. The Senior DCO Bukedea was also invited to train the caregivers on positive parenting and hygiene and sanitation issues and a total of females and males benefitted from GBV training while 125 females and 17 males also participated in child protection training.

We deeply appreciate your commitment to nurturing these young souls. Your kindness and generosity are not only shaping their educational journey but also laying the foundation for a well-rounded and empowered future generation.

Thank you once again for your unwavering support and belief in our mission.

Warm regards,

SCOEN Team

With sickle cell anaemia, financial challenges are a recurring theme among the caregivers. Many struggled to afford proper medical care and treatment for their children with limited financial resources. Some maybe receiving occasional support from family and friends, but the overall financial burden remained significant.

Recounting stories of resorting to borrowing money from friends and resorting to land sales to meet the escalating medical bills and transportation expenses. Caregivers face hardships related to accessing healthcare services, especially for various age groups and the severely ill, because of the remote locations that caused arduous journeys on foot to reach the nearest healthcare facility.

Here are some of the testomonies:- 

"Finances… disturbs us a lot, ever since I saw it… I have ever sold my land to spend over 4 million to reach him where he is…”

“Sometimes the money that you could have for him to take him to school you take it to the hospital. Sometimes we reach here while I admit you and there is no medicine..”

 “Even when the husband has no money, you can be worried, deep inside your heart, while you say that where is the man going to get the man, while I am going to take the child to the hospital, and I even buy the medicine..”

Most care givers  lament the burden of the wholesome money spent on the diet and nutrition on the affected children since the times of diagnosis, since extra care and precaution has to be taken because of their delicate nature, any time they can get illness, or an attack, “…you have to make sure that atleast he eats anything that he asks from you, since you delay, things may not end well,… I have to make sure that he eats a balanced diet on every meal…”

“.. the beginning, we didn’t know what was the exact cause of his illness while every time he used to be sick, now I think like in 2022 in November, that’s when we came to know of it…”

With stigma, neighborhoods and social interactions, many caregivers express feelings of inadequacy, particularly when surrounded by healthy children. These sentiments extended beyond the hospital setting to their homes, where the unpredictable SCD attacks of their children sometimes led them to conceal the illness to ward off the perceived “evil eye.” Some caregivers also experience  insensitive behavior from their neighbors, which leave them disheartened.

“There is a time when a neighbor came at home and said, ’that child, pay my mother, but for you, you are a young child, why are you despising me?’ Then he replied; ’now how have I undermined you?’ Then the neighbor replied, ’for you, you may not even reach my age.’ So that child had to burst out and cry and said, ’but why are you telling me such?”

We deeply appreciate your commitment to nurturing these young souls. Your kindness and generosity are not only shaping their educational journey but also laying the foundation for a well-rounded and empowered future generation.

Thank you once again for your unwavering support and belief in our mission.

Warm regards,