One of the most encouraging parts of being involved in Adara’s work is getting the opportunity to meet some of the people who have been affected by it. Talking to, and hearing about their experiences, truly drives home the personal side of Adara’s work, and how it is helping people, all with their own story. Two people whose stories are particularly powerful on this International Day of Persons with Disabilities are that of twenty year old Fred, and his amazing mother.
Fred came into contact with Adara’s work through the Community Based Healthcare (CBHC) programme. Unfortunately, Fred suffers from a number of health issues. Concerns about his health began early, when one week after birth, he struggled to breastfeed. Taking him to a hospital in Kampala, his mother was told the news: Fred had sadly been born with severe brain damage. After returning home, his mother faced a range of problems in caring for him. Even when she could get him to breastfeed, he would often vomit immediately after, and he was unable to put on much weight.
As time went on, Fred’s disability became more pronounced. While his twin sister was standing at 3 months, Fred was unable to do the same until he was 6 years old. Around that time, he developed severe tuberculosis of the spine, leaving him with a huge hump on his front and back, as well as many other health conditions.
To complicate matters even further, after he turned seven, Fred began to suffer terribly from seizures. He would have epileptic fits up to 30 times a day, but his mother was not even aware of what epilepsy was, and had no idea what she could do to help him.
Thankfully, a health worker from the CBHC program visited the family, and inquired about Fred’s condition. Upon learning of his seizures, they were able to put his mother in touch with the epilepsy programme at Kiwoko Hospital, and Fred was soon enrolled in the clinic. With medication, Fred’s fits slowly began to reduce in frequency to just six a month, then three a month. Eventually, Fred went a whole month without a fit. His mother was ecstatic. Fred stayed on the epilepsy medication for eight years without a fit, and after that he was slowly weaned off it and has had no problems with seizures since!
Fred’s mother is a single mother, with seven other children in addition to Fred. She spoke of how grateful she was for this support. It has meant she doesn’t have to be with her son 24 hours a day, and live in constant fear of another seizure.
Fred himself seemed excited too. He had a lot of smiles, and even got up and had a dance when a truck playing music passed by.
Even with this success though, Fred still has a difficult road ahead. His father abandoned the family when Fred was a baby, and his mother is HIV positive. She is worried about what will happen to Fred if there is no one there to care for him.
But with the assistance of Adara and Kiwoko, and with Fred’s seizures a thing of the past, the future is not looking quite so scary. Knowing that healthcare is never too far away gives Fred’s mother a sense of peace, and she is able to smile along with us as we watch Fred dance to the music from the passing truck.