My daughter’s story shines a light on myasthenia gravis in children
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David Mugisha is a father to a daughter with myasthenia gravis. (Photos courtesy of David Mugisha)
In recognition of Myasthenia Gravis Awareness Month in June, the Myasthenia Gravis Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by myasthenia gravis, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MGAwarenessMonth, or read the full series.
My daughter, Amarah Mugisha, is a young and courageous child whose life journey has been marked by strength, resilience, and hope. At just 1 year old, Amarah was diagnosed with myasthenia gravis (MG). Her diagnosis was made at the Mulago National Referral Hospital in Uganda.
Amarah Mugisha is a child living with myasthenia gravis.
Before the diagnosis, my wife and I noticed that something was not quite right. She often appeared unusually weak for her age. Simple activities that most children perform naturally — such as holding her head up, moving her arms, or maintaining energy while playing — were difficult for her. Her muscles would tire easily, and at times she struggled with movements that should have been effortless for a child. She slept for many hours day and night. We’d wake her up to eat, and then she’d fall asleep again, which didn’t sit well with us as parents.
Concerned about her health, we sought medical attention. Amarah experienced her first crisis after we were admitted to Rubaga Hospital for a chest infection. She’d had a prolonged cough and ended up with pneumonia. We were then sent to Mulago Hospital when things worsened due to her weakness. The doctors said her lungs were too weak, and they couldn’t figure out the cause.
After several medical examinations and careful observation by doctors at Mulago Hospital, Amarah was diagnosed with MG. The diagnosis was both heartbreaking and confusing for us, as we had never heard of the rare condition. Honestly, we couldn’t even pronounce the words.
David Mugisha is his daughter Amarah’s greatest advocate.
We started researching and reading as much as we could about MG to get more information for Amarah. Despite facing challenges with everyday activities that other children her age might take for granted, Amarah has shown remarkable courage.
Living with MG has required frequent medical care, patience, and strong support from healthcare providers and us as parents. We have become her greatest advocates, ensuring she receives the treatment, monitoring, and love she needs to continue growing and fighting.
Although her journey has not been easy, Amarah’s story is one of resilience and determination. Each day, she faces a condition that many people do not understand, yet she continues to inspire those around her. Her story highlights the importance of awareness, early diagnosis, and support for children living with rare diseases.
Amarah’s life is a reminder that even the smallest warriors can carry the greatest strength. Through awareness and compassion, her story can help shine a light on MG and the realities faced by children and families living with this condition.
