Hannington's Story: a son's devotion

Hannington Kabugo lost his mother Milly to Parkinson’s Disease nearly two decades ago. As her condition worsened, Hannington recalls, Milly's tremors became so intense that she couldn’t walk, wash, or even hold a cup. Like many afflicted with this devastating neurodegenerative condition, Hannington’s mother suffered immensely.

Unlike those who receive this diagnosis in the developed world, she suffered in isolation and died alone. In Uganda, this is the heartbreaking reality for those stricken with Parkinson’s Disease. Many Ugandans believe those suffering from the affliction have been punished for practicing witchcraft. Milly Kabugo, like so many others in Uganda, was believed to be cursed. Hannington’s father believed this, so when his wife, the mother of his children, became ill, he separated from her out of fear that her curse was contagious.

Hannington’s mother endured her illness without treatment or human contact, struggling through her final days in the face of crushing loneliness. Hannington has since dedicated his life to sparing his fellow Ugandans from this unthinkable fate. As the founder of Parkinson’s Si Buko (translated as Parkinson’s is Not Witchcraft), Hannington works tirelessly to inform and educate Ugandans on the realities of Parkinson’s disease. Working to shift perceptions and protect others from the rapid decline that comes with untreated Parkinson’s Disease,  Parkinson’s Si Buko is committed to removing the stigma around this condition. Your support will help fund critical awareness campaigns, information seminars, health care training, medical conferences, and improved access to medicine, therapy and human support for Ugandans living with Parkinson’s Disease.

Imagine suffering from a neurological condition that not only robs you of your body and mind, but which takes your family from you as well. Imagine being shunned, ostracized, and accused of witchcraft even as this condition ultimately takes your life. 

This is what happened to Hannington Kabugo’s mother, Milly, and it’s what happens to countless Ugandans who are stricken with this terrible neurodegenerative illness. In the developed world, Parkinson’s Disease is recognized as a debilitating and terminal condition that afflicts the central nervous system and deprives an individual of control over their speech, movement, and, eventually, over the basic bodily functions required for survival. 

While there is no cure for Parkinson’s Disease, medicine, therapy, and exercise are essential for slowing its progress, improving survival, and raising the quality of life for those battling the condition. Sadly, far too many Ugandans are deprived of this opportunity, forced instead to live their final days in solitude, neglect, and suffering.

This is how Milly Kabugo spent her final days, alone in her home, unable to walk, feed herself, or provide basic self-care. In the video below, Hannington describes in heart-wrenching detail the day that his father left Milly behind, taking the children with him. Milly was left to battle this mysterious affliction alone. Hannington’s father explained that this was the only way to protect the family, that their mother had been cursed, and that separation was necessary to spare the children from this same fate.

Against his father’s will, Hannington would sneak out of their rented house to check on his mother. He witnessed her rapid deterioration, her immense suffering, and her agonizing isolation.

Hannington watched his mother die alone. This is a heartbreak that nobody should know.

But for Hannington, this heartbreak would also be a call to action. He formed Parkinson’s Si Buko Uganda and pledged himself to create help and hope for sufferers of Parkinson’s Disease in Uganda and throughout the African continent.

Parkinson’s is a devastating condition, no matter where you come from. If you have witnessed a loved one in the grip of this disease, or you yourself are grappling with Parkinson’s, then you understand the feelings of helplessness and hopelessness that can cast a shadow over your worst days. 

But on better days, medicine, therapy, exercise and the support of loved ones can bring comfort and hope. In Uganda, far too many endure this devastating condition alone; their families are made to watch this suffering from afar, or escape the gaze of tragedy altogether. 

Parkinson’s is a cruel condition for which there is not yet a cure. Loneliness is likewise a cruel condition, but one for which we do have a cure. With continued education, awareness, and empathy, we can change the way that Ugandans understand and treat individuals living with Parkinson’s. We can create hope, improve the prospects of survival, and raise the quality of life for so many who are suffering today.

But in order to do so, we need your help! Your contributions will shine a much-needed light on a condition that is shrouded in stigma and misunderstanding for far too many Ugandans.