“They Said He Was Lazy”: Jeremy’s Quiet Fight with Duchenne Muscular Dystrophy

Jeremy is 11 years old. He is gentle, observant, and thoughtful in ways that often go unnoticed. From the outside, his body still looks strong. His posture is upright. His limbs appear capable. And that is exactly why his struggle has been so misunderstood.
When Jeremy began falling frequently, his mother, Zilpha Waloe, knew something was wrong. At first, it looked like clumsiness. A stumble here. A fall there. But the falls kept happening, and a mother’s worry does not fade with repetition.
Zilpha took Jeremy to the University of Nairobi Health Services clinic after several falls. The doctor listened carefully and referred them to see a neurologist. That referral would change their lives.

They were asked to do blood tests to check Jeremy’s creatine kinase levels. When the results came back, the number was alarming. Jeremy’s CK levels were at 7,000, far higher than normal. From there, they were referred to MP Shah Hospital for further testing.
It was there, after neuromuscular tests and consultations, that the diagnosis came. Duchenne muscular dystrophy.
For Zilpha, it was a moment that split life into before and after. She learned that Duchenne is progressive. That there is no permanent cure. That her son’s muscles would slowly weaken over time. She learned words she never wanted to know. Progression. Inflammation. Management. Slowing down what cannot be stopped.
They were given medication to help reduce inflammation and slow progression. They were advised to start physiotherapy to manage pain and preserve mobility for as long as possible. And just like that, Zilpha became more than a mother. She became a full time caregiver, advocate, protector, and planner of a future filled with uncertainty.

Zilpha is the sole caregiver in her home. She has another child to care for. She works at the library department at the University of Nairobi, balancing employment with hospital visits, therapy appointments, and the emotional weight of watching her child navigate a condition the world barely understands.
The challenges have been many.
Medication for Jeremy is expensive and ongoing. Therapy costs add up quickly. Mobility is difficult because the area where they live does not have smooth terrain, making movement physically demanding and unsafe. Transportation is a daily fear. They rely on public transport, crossing busy roads, and every trip comes with a quiet prayer that Jeremy will not fall in the middle of traffic. But some of the hardest challenges have not been medical.
Because Jeremy still looks physically strong, people assume he is slow by choice. Lazy. Unmotivated. Uncooperative. Words that cut deeply when spoken about a child who is already trying his best just to keep up. xactly why his struggle has been so misunderstood.

These assumptions have taken a mental toll on Zilpha. They have also affected Jeremy. There are days he chooses not to play. Days he pulls back from his social circle. Days when being misunderstood feels heavier than the condition itself. Yet, in the middle of all this, there is light.
Jeremy’s school has become a place of support and understanding. Teachers and classmates help him move around. They are intentional about creating an inclusive learning environment that allows Jeremy to focus on learning without constantly worrying about his physical limitations. For Zilpha, this support has been a reminder that inclusion is possible when people choose to learn and care.
Inclusion, she believes, starts with understanding.

Communities need to learn more about Duchenne and other conditions before forming opinions. Perception without knowledge hurts families. It isolates children. It adds unnecessary emotional weight to an already difficult journey. Educators, she says, must look beyond academic performance. Learners need to be seen emotionally and physically, not just intellectually.
A child may be quiet because they are tired. Slow because they are in pain. Withdrawn because they are protecting themselves from judgment. Zilpha has chosen to turn her pain into purpose. She is now one of the voices advocating for Duchenne awareness, helping others understand what families like hers face every day. She speaks so that other children are not labeled before they are understood. So that other mothers do not have to explain themselves over and over again.
Jeremy’s story is not about weakness. It is about resilience in silence. About a child navigating a world that often moves too fast. About a mother doing everything she can to protect her son’s dignity while carrying more than most people will ever see.

There are many families like Zilpha and Jeremy. Families managing medication, mobility challenges, financial strain, and emotional isolation. Families who do not need pity, but understanding. Not assumptions, but awareness. Not silence, but community.
When we choose to learn, to listen, and to stand with families living with Duchenne, something shifts. Children are seen. Caregivers are supported. And the journey becomes a little less lonely. Jeremy is still a child. He still deserves to belong, to play, to learn, and to move through the world with dignity. And with the right support, understanding, and community, that future becomes possible.