One Family’s Devastating Struggle With a Mysterious Disease

In a compound nestled in Gitata, a remote community in Nasarawa State, North Central Nigeria, life has slowed to a crawl for the children of the late Mr and Mrs Bawa Danladi. Here, adulthood doesn’t begin with the wings of independence but with the sudden stillness of limbs.

In this house where joy once rang and children laughed freely, a strange affliction casts its long, silent cloud, stealing mobility, dignity, and dreams. The only shared pattern? The affliction grips every family member after they turn 18.

Eighteen is pegged as the age of majority in Nigeria. For some people, turning 18 connotes ‘leaving their nests’; however, for Danlami Dalandi and his siblings, it means being robbed of their coming of age.

Of the eight children born to the late Danladi, seven have been struck by a relentless and mysterious condition. Six are now completely paralysed, while another has lost her sight. For a family once filled with life and energy, the tragedy is not just that their bodies have failed them, but also that nobody seems to know why.

Danlami, who is now in his mid-forties, sits slouched, needing help to eat or shift even slightly in his chair. His voice cracks with exhaustion, but he presses on, determined to speak for himself and his siblings. They have become ghost versions of their former selves, slowly caving under their helplessness.

“I thought turning 18 would bring freedom,” said Danlami, the family’s eldest son, his voice heavy with sorrow. “Instead, it was the beginning of our end.”

As he explained his condition, Danlami’s gloomy face needed no interpretation of the emotional exhaustion it carried. While speaking to HumAngle, he described how he moved from a boy filled with energy to a man who couldn’t walk or stand.

He was the first in his family to encounter the enigmatic illness in 2001. It quietly took hold, showing no fever or noticeable symptoms, but slowly drained his strength. Activities that used to be simple started to feel overwhelmingly difficult. Years later, his younger brother Pious began to show the same symptoms, following the same unsettling pattern.

The illness didn’t strike in childhood. Instead, it waited until they crossed into adulthood, then everything began to deteriorate. Their strength faded, and mobility became a struggle. Even their eldest sister, Asabe, seemed spared at first. She married and gave birth before the sickness took hold. Unable to move without assistance, she shares the same fate as her brothers, who are all trapped in a body that no longer obeys.

The major setback

In 1990, when their father passed away, their mother became their anchor. She carried their burden, pushing wheelchairs, cleaning them up, feeding grown children, and wiping tears no one else saw. In a community with no formal support system, she became nurse, caregiver, and breadwinner at the same time.

When asked if the disorder has a historical origin within the family, Danladi told HumAngle that the condition is alien to them, as their parents, grandparents, and great-grandparents were known to be hale and hearty until their demise.

“Our parents never had this sickness. We even asked if our great-grandparents or grandparents had such illnesses, but none of them did. It is only we, born of the same mother, that are afflicted by this sickness,” he said.

For years, their mother carried this weight of care. When she died in 2017, the siblings were left not just physically immobilised but emotionally adrift. 

Danlami said that despite their condition, they still bear the guilt of being unable to assist their mother. “She was our world,” says Danlami quietly. “She believed we could get better, even when we didn’t. She died in 2017, and that was when it truly felt like everything stopped.”

A rare disease

Their only formal visit to a proper medical facility happened in 2018, and no diagnosis was shared. They were taken to the Federal Medical Centre in Keffi courtesy of the Berekete Family, an Abuja-based reality radio and television programme. Tests were conducted, but no diagnosis was shared. They never saw the results, though they received some financial assistance.

When the broadcast station spotlighted the issue, the Nasarawa State Ministry of Health sent its representatives, including doctors, to conduct additional tests, suspecting polio. But according to Danlami, the only thing the officials told them was that “it’s not polio.”

Dr Douglas Okor, a consultant neurosurgeon at the Federal Medical Centre, Abuja, told HumAngle that the family might be experiencing a type of muscular dystrophy, a rare and often misunderstood genetic condition that quietly ravages the body’s muscles, starting in adolescence and worsening with age.

According to Dr Okor, the most familiar kinds, like Duchenne and Becker, typically affect boys early in childhood. But a lesser-known group called Limb-Girdle Muscular Dystrophy (LGMD) can surface in late adolescence or early adulthood. LGMD begins in the hips and shoulders and steadily disables the body, just like in the case of the late Danladi’s family.

“LGMD often appears in families with no known history. It can be inherited silently until two parents, both carrying the mutated gene, pass it to their child,” he noted. “Over time, patients lose the ability to walk, feed themselves, or even breathe without assistance, in some cases.”

Rare diseases such as LGMD affect a small percentage of the population, but they pose daunting challenges, especially in low-income countries where awareness, diagnostic tools, and specialised care are limited. While thousands of rare diseases exist globally, many of them genetic, accurate data on their incidence in Nigeria remains scarce, largely because of underreporting or misdiagnosis. 

A study at the University College Hospital, Ibadan, southwestern Nigeria, uncovered 11 cases of Duchenne muscular dystrophy over five years. One key finding was that scarce medical resources and early warning signs were routinely overlooked, leaving patients to arrive late and already deep into the disorder’s grip.

Like Danlami said, they were active children when they were younger. “I used to climb trees, play football, and help on the farm. Then, slowly, it became hard to move. And it never got better.” Their condition kept deteriorating because they were never diagnosed.

His brother, Danjuma, was the family’s powerhouse. Known around Gitata as “the Usain Bolt of the block”, he could out-sprint his peers when he was younger. He later worked as a mechanic, fixing generators, rewiring appliances, and bringing light to homes. Today, he cannot even brush his teeth without assistance.

Dr Okor explained that the symptoms often mask themselves as ordinary fatigue. Unlike infectious diseases, muscular dystrophy doesn’t produce visible inflammation or fever. “That makes it harder to detect, especially in low-resource settings like Gitata, where most people have never heard of the condition.”

Although rare, he noted, the illness can be managed if detected early, with input from multiple specialists and continuous rehabilitation. “It can be managed by a combination of a neurologist, physiotherapist, and occupational therapist,” Dr Okor said.

However, for the Danladi family, such options remain beyond reach, both financially and geographically; there is virtually no system in place to lean on. 

Nigeria has a National Commission for Persons with Disabilities, set up to protect rights and prevent discrimination, but there is no specific programme or policy dedicated to rare neuromuscular disorders like muscular dystrophy. Experts have long urged the government to create a framework for early diagnosis, registries, and specialised support services, but so far, these calls have gone unanswered.

One still standing

Since their mother’s death, the family has been left with one carer: Hannatu, their youngest sister.

The 25-year-old is the only sibling untouched, at least physically. Each day, she cares for her brothers, helping them bathe, eat, and reposition their stiffened bodies when necessary. 

But fear stalks her.

“I don’t know if it will reach me too,” she said, her voice barely audible. “In 2018, our youngest brother was fine. Now, he can’t lift his arms.”

Every tick of the clock reminds her she could be nearing the family’s invisible threshold. Though she has passed the age, she wonders constantly if she’s merely living on borrowed time.

Beyond that dread, the condition carries additional emotional scars for the women in the family. 

Her older sister, Cecilia, 28, is already living with the burden. The 28-year-old has already lost vision in one eye and movement in one of her legs. But what haunts her more is loneliness. Her and her sister’s futures are not just on pause; their love lives are equally hanging in the balance.

“Suitors don’t come our way. I think they’re afraid. They think it’s contagious. Honestly, we’ve all given up on the idea of marriage,” she told HumAngle.

Hannatu nods in silence as Cecilia speaks. Their dreams of families, weddings, careers, and travel have all withered into survival routines. The family’s closest neighbour feels a blend of heartbreak and helplessness. 

“We’ve watched this unfold over 20 years,” Shuaibu Adamu, a neighbour and family friend, said. “First, it was Danlami. Then the others followed. No one knows what this sickness is. We just pray for them to heal.”

In a country battling an overstretched healthcare system and public scepticism of rare diseases, families like the Danladis often slip through cracks too wide to fill. Without consistent intervention or support, their fate remains unchanged.

For now, Hannatu stays vigilant, her hands full, her heart heavy. But she sometimes wonders how long she can keep holding everyone up without falling herself.