Like any first-time mother, Sarah Chande was excited about the journey of her baby boy, Malcolm. He was born healthy and full of life, just like other babies, but as he grew, something felt strange.
Malcolm crawled using the butt instead of hands and knees, his mother was told this is a normal variation of infant mobility, but as days went by Malcolm didn’t show any signs of taking his first steps. By his first birthday, he hadn’t taken his first steps and during his second, he still couldn’t walk. “As a mother,” Sarah narrates, “a quiet fear began to take root.”
Malcolm was taken to the hospital, but the general diagnosis showed he had no problem. As a mother, Sarah tried some regular exercises and supplements, and by age three, Malcolm could walk. However, the boy was unable to run like other babies his age or enjoy kids’ games like jumping on a jumping castle.
They say mothers have a golden heart, and Sarah is one of them, as she never ceases trying her best. So, she decided to take Malcolm to school with the hope that he would get better and enjoy his childhood by playing with children at school. But things didn’t turn out as she expected, because it became hard for Malcolm to even climb on a school bus due to muscle pain.
He was even unable to use the school staircases, and, worse yet, he eventually started falling most of the time, which made Malcolm terminate his studies.
Malcolm’s diagnosis
One day, when Malcolm was seven years old and without an appointment, his mother took him to the hospital, hoping to find help. Luckily, on that day, a team of visiting expert doctors from abroad was present. Upon arrival, the receptionist informed them that seeing a doctor without an appointment wouldn’t be possible, as many patients were already waiting.
Thanks to Malcolm, a boy wise beyond his age, he looked up at the receptionist and said: “Please help me; I wish to know what troubles me so that I can be cured and get back to school.”
READ MORE: From Diagnosis to Daily Triumphs: Navigating Rare Diseases in Tanzania
The receptionist decided to assist them. When the doctors just saw Malcolm, it took only a glance for them to recognise the signs of Muscular Dystrophy, a group of neuromuscular genetic disorders characterised by progressive muscle weakness and wasting, estimated to affect approximately 1 in 5,000 individuals worldwide.
To confirm their suspicion, Malcolm had to take blood tests to check creatine kinase (CK) levels, a key indicator of muscle damage and a muscle biopsy. The results were heartbreaking as his condition was already severe.
Knowing which type of muscular dystrophy was still an unanswered question, only until some years later when his mother took Malcolm’s samples to America and finally confirmed that he was suffering from Duchenne Muscular Dystrophy, a genetic disease that causes progressive muscle weakness and loss of muscle mass.
That day marked the beginning of a new chapter for Malcolm and his mother, filled with challenges and the search for the best possible care.
Life after diagnosis
“Seeing my child’s wellbeing deteriorate was the hardest experience as a mother,” Sarah recalls. The suggested possible care was exercises, supplements like stem cells, and family love. Muscular dystrophy is a progressive disease. Malcolm wasn’t getting better over time, this became worse as Malcolm fell one day and broke all his legs, since then the bed was his new home.
Malcolm was indeed a special boy. He never lost hope after realising what was troubling him. He even told his mother: “Everything that happens is God’s will, and God loves me so much. That’s why he gave me this disease; he knows I can handle it.”
It was not easy to look after a child with muscular dystrophy. Malcolm’s mother faced numerous difficulties not only regarding his medical requirements but also from social stigma. Some believed that his condition was caused by witchcraft, which only added to the already long list of challenges.
Malcolm Ali Masoud, despite being bedridden for about 10 years due to Muscular Dystrophy (MD), was full of hope and a smile that defined his strength.
Financial issues were no exceptions. Special equipment such as the medical bed was very costly. Thanks to the friends, relatives, and doctors who helped Malcolm with his needs as at that time, as no organisation in Tanzania could help him.
Sarah also noticed that there were no psychological services for parents. Many diseases were not explained and understood in detail, and hence the families had no chance of understanding the disease and the care to be given to the patient.
As she knew more about the disease, she realised its severity, but that was the reality. The only thing that made her anxious was how to prepare for his death. To stay with him all the time, she had to make the painful decision of leaving her job and spending the rest of her time taking care of him. With all the problems and misery, she is glad at least she had the chance to be with her son for the 20 years of his life before he died.
As she learned more about the disease, Sarah grasped its severity and came to terms with the harsh reality. Her greatest worry was not the illness itself but how to prepare for his passing. To be by his side at all times, she decided to leave her job and dedicate herself entirely to his care. Despite the pain and hardships, Sarah found peace in knowing that she had the precious gift of spending 20 years with her son before he passed away.
For Malcolm, the road to diagnosis was long and confusing. Years passed before he finally received an answer, a painful delay that is all too common for people living with rare diseases in Tanzania. Sarah said the emotional pain of not knowing what was wrong with their son weighed heavily on them.
Larger struggles
Malcolm’s story reflects the larger struggles faced by those with muscular dystrophy, who often endure misdiagnosis, financial hardship, and a lack of support.
READ MORE: Saving Lives Of Little Ones: A Slow-Paced Journey
One of the biggest obstacles to identifying rare diseases is their difficulty. Tanzania’s healthcare system lacks specialised diagnostic facilities for Muscular Dystrophy and other rare diseases. Many families are forced to seek medical opinions abroad, an option that remains out of reach for most. Even within the country, very few healthcare professionals have expertise in these diseases.
For those who do receive a correct diagnosis, the next challenge is affordability. Treatment, therapy, and assistive devices such as medical beds and wheelchairs come at a staggering cost. Without financial assistance, many families simply cannot afford them.
On top of this, social stigma creates further suffering. In our community, rare diseases like muscular dystrophy are wrongly associated with witchcraft, leading to fear and discrimination.
Sarah with her son, Malcolm. Through every challenge of Muscular Dystrophy, a mother’s love remains the greatest source of comfort and courage.
Muscular dystrophy in Tanzania urgently requires a multi-faceted approach that begins with improved awareness and early diagnosis. Educational campaigns aimed at the public and healthcare professionals are also essential to highlight its early signs and symptoms.
By increasing understanding among medical professionals, families can benefit from quicker referrals and earlier interventions, which can significantly impact the progression and management of the disease.
Investment in neuromuscular research and the development of dedicated diagnostic facilities would not only aid in providing timely and accurate diagnoses but also contribute to a better understanding of the disease’s prevalence in Tanzania.
Steps are already being taken to change this reality, particularly through the work of NGOs including Tanzania Human Genetics Organization (THGO) which has made progress in addressing the challenges of diagnosing rare diseases by establishing a diagnostic framework that includes genetic counseling and genetic testing for selected cases, reducing misdiagnoses and improving early detection.
THGO is now developing a rare disease database to better understand the prevalence and distribution of such conditions, enabling researchers and policymakers to create more effective healthcare strategies.
Today, Malcolm’s mother is not just a grieving parent; she has transformed her pain into purpose. She is a rare disease activist and is about to publish a book, sharing her journey and raising awareness.
Her message to society is that rare diseases are real and that it is time to abandon negative misconceptions. Instead of placing blame on mothers, families should seek proper medical help. She also calls for more government and organisational support for people with rare diseases.
Esther Masalu is an undergraduate student pursuing a Bachelor of Science in Applied Microbiology and Chemistry at the University of Dar es Salaam, UDSM. At THGO, she is currently the Communication Team Co-Lead. She can be reached at esthermasalu161@gmail.com, on Instagram at esther_masalu_161
Evance Tarimo is an undergraduate student pursuing a Bachelor of Science in Molecular Biology and Biotechnology at the University of Dar es Salaam, UDSM. At THGO, he is currently volunteering as a member of the communication and artwork teams. He can be reached at tarimoevans22@gmail.com on Instagram at t.m.e.v.a.n.s
