His Story
A journey through fear, faith, and finally — answers.
Every line of this timeline is a day his family will never forget. We share it so other parents don't have to walk the same road blindly.
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1
Age 4.2
The first Jerk
While at school on 1st August,2025, It started as an automatic muscle spasm or reflex — A sudden fall with hard jerk in his left leg and arm. The teachers thought it was a muscle pull. We rushed him to the Hospital (IHK -Kampala) and was admitted for five days. The doctors First labelled it Paroxysmal Kinesigenic Dyskinesia (PKND). Medication helped briefly — then stopped working entirely.
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2
7 days later
A Second Chance
7 August 2025: His lips began twitching. Family elders believed that the condition was spiritual, so we tried traditional remedies, prayers, and rituals. However, his condition continued to deteriorate. Soon, his eyes and the entire left side of his body began to twitch and jerk violently, and the seizures became increasingly severe. 9 August 2025: Convulsions became extremely severe, causing his eyes to roll upward. We rushed him to a clinic, where he was pronounced dead. This was the darkest and most devastating moment of his illness. However, we did not believe the nurse's diagnosis. later that same night, at around midnight, we transferred him to a specialized hospital. There, a senior female doctor carefully examined him, checked his vital neurological responses, and immediately admitted him to the Intensive Care Unit (ICU). She gave him another chance at life. After approximately 14 hours in the ICU, he finally blinked his eyes—a small but powerful sign that he was responding and beginning to regain consciousness. We were overwhelmed with joy and hope once again. It felt as though we had been given our child back.
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3
3 months in
A Mystery Unfolds
His entire body developed a severe, measles-like rash and began to swell abnormally. His skin changed color from reddish to maroon and eventually to purple. His body temperature remained dangerously high, and he was admitted to the hospital, where he stayed for some time under close medical observation. He could no longer control his saliva, which continuously flowed from his mouth. Despite the doctors’ efforts, no medication seemed to work, and his swelling continued to worsen. Numerous tests and scans were carried out, but remarkably, all the results came back negative. The doctors tried different approaches but could not determine what was causing his condition. To rule out every possibility, they sent samples to specialized laboratories in Nairobi and the United States for further testing. Yet, even after these extensive investigations, no clear diagnosis was found. For our family, it was another devastating and frightening chapter. We were running out of answers, the doctors were running out of options, and no one knew what would happen next.
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4
9 months in
Labelled 'just epilepsy'
Another doctor prescribed standard anti-seizure medication. He continued to deteriorate, losing strength on his right side.
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5
Age 3 1/2
The right diagnosis
A pediatric neurologist ordered an MRI. The verdict: Rasmussen's encephalitis — a rare inflammation of one brain hemisphere.
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6
Two weeks later
The hemispherectomy
The only treatment that stops the disease: surgically disconnecting the affected hemisphere. A terrifying, life-saving choice.
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7
Today
Learning to run again
He walks with a slight limp. He laughs every day. He still wears his red jersey. And he still dreams.
"We only needed neurologists not traditional remedies. The valuable time and money lost could have been directed toward the specialized care our child needed. If sharing our story saves one child that time, it was worth telling."
— His mother