Crawling to live: Family fights rare muscle-wasting disease amid poverty

John Mwangi, 39, and Godfrey Mbugua, 32, who are living with disability, at their home in Engashura, Nakuru. ‎[Kipsang Joseph, Standard]

It is a bright afternoon at Engashura area on the outskirts of Nakuru City. John Mwangi, 39, and his younger brother Godfrey Mbugua, 32, drag their bodies slowly toward the narrow doorway of their home.

Their palms and chests scrape against the dry earth, sending fine clouds of dust into the air that cling stubbornly to their skin and clothes.

Every inch forward demands patience, strength and resolve. The house they crawl towards is small, with mud walls and a roof of rusting iron sheets, offering little shelter from the harsh sun. 

Crawling is not a choice, it is the only way they can move. 

A few steps away, their mother, Tabitha Wambui, bends over a plastic basin washing dishes. Every now and then, she pauses to watch her sons, ready to step in if either of them falters. “I must always be here, I do not go anywhere, I have to watch over them,” she said .

The story of this family is one of rare hardship and extraordinary endurance.

Out of eight members, three live with physical disabilities. Apart from Mwangi and Mbugua, their younger brother, Peter Kamau, 23, also has the same condition.

In addition, a daughter, who declined to be interviewed, has two sons with disabilities, bringing the total number of family members living with disability to five.

“It is very challenging. My daughter was married in Kitale; her firstborn and second child died, and the third and fourth are disabled. Because of this, her husband and his family began mistreating her and eventually chased her away. She returned home with the children, making life even more difficult here,” said Wambui. The daily survival of the family rests squarely on the shoulders of the head, Francis Kiarie. Each morning, he pushes a heavy knife-sharpening machine through the estates, calling out to residents in hopes of earning a few shillings.

“On a good day, I make about Sh300; on many days, I return home with nothing,” said Kiarie.

That small and uncertain income must stretch to cover food, medication, diapers, school fees and other basic needs.

“They crawl because wheelchairs strain their bodies. Crawling is the only way they can move,” Kiarie explains.They are paralyzed from the waist down, leaving them unable to walk or stand, and even sitting is a challenge.

Tasks most people take for granted, such as going to the toilet, become complicated routines that require constant assistance.

“They use a potty, and later someone must carry the waste outside to the latrine. Crawling across the compound leaves their hands raw and their clothes permanently stained with dust,” said Wambui.“If we had a bigger house with a proper floor, life would be very different. Space and cleanliness would give them dignity,” added Kiarie.

Wambui has devoted her entire life to caregiving. She does not leave the compound from dawn until nightfall. She cooks, cleans, bathes them, feeds them, and helps them use the toilet. “Imagine washing five people every single day. Sometimes my body is exhausted, but I remind myself these are my children,” she said.

The children were born healthy, and their condition only became noticeable when they were infants, around four months old.Kiarie says he has tried to investigate and trace the condition in both his own family and his wife’s lineage but found no history of a similar illness.

“I tried to investigate where this problem could have originated. I inquired from my side of the family and also from where my wife comes from, but I found nothing. I just have to accept it as God’s will. You cannot abandon your children because of a disability, they are mine,” said Kiarie.

The family took the children to a special school, but poverty has interrupted their education.

They have been attending Nakuru Hill Special School, but due to unpaid fees, they were sent home. “They have not gone to school this term because of the fee problem. Only the youngest, Kamau, is at school, though the threat of being sent home looms constantly.

Medical experts have since identified the condition as muscular dystrophy, a group of inherited genetic disorders that cause progressive muscle weakness.

Dr Kennedy Kimani, a neurosurgeon at Nakuru Level Five Hospital, explains that muscular dystrophy is not a single disease but a collection of more than 30 related conditions caused by genetic mutations.“The defining feature is progressive muscle weakness that worsens over time. This happens due to mutations affecting dystrophin, a protein responsible for maintaining muscle strength,” said Dr. Kimani.

As the disease progresses, muscle tissue gradually degenerates and is replaced by fatty tissue, leading to loss of mobility. In severe cases, vital organs may also be affected. “There is currently no cure. Treatment focuses on physiotherapy, symptom management and close monitoring of the heart and lungs,” Dr Kimani adds.

Local leaders and well-wishers have begun to respond. Former area MCA Wahome Jambokenya said the family urgently needs a decent house with a proper floor. “They are grown yet still depend on others for everything. The environment here makes life even harder,” said Jambokenya.

“I thought they needed wheelchairs, but when I arrived I realized what they really need is sustainable support, like food, diapers and income-generating opportunities,” said Rani Ramchandani, a well-wisher who visited the family to donate food and other essentials.

Local politician Mary Mannabay has also called on the government to establish specialised institutions for children living with severe disabilities. “Families should not hide children with disabilities. Doing so denies them access to help and violates the law,” she said.