10-year-old Shahadat racing against time in battle against rare disease, progeria

Parents of 10-year-old Shahadat Hossain could not take him to doctor for money. Photo: Md Mizanur Rahman Yusuf.

With his face bearing the weight of time, teeth missing and skin sagging, Shahadat appears as if he's lived seven or eight decades. 

In truth, he's just reached his tenth year. 

Shahadat Hossain, the son of a rickshaw-puller, reads  in class two. Afflicted with the rare progeria disease, Shahadat's life is slipping away without the necessary treatment. 

Instead of playing with friends, he's confined to a small yard of his house along the Dhaka-Chattogram highway in the Kamaldah area of Mirsarai upazila. 

This modest 150-square-foot space has become his playground, where he pedals his bicycle to his heart's content.

His days and nights revolve around his parents and elder sister. 

His mother, Nasima Begum, laments that the local Government Primary School refused to admit him due to the head teacher's reluctance. 

As a result, he has to travel two kilometres to attend school, an endeavour costing Tk50-Tk100 daily. 
Sadly, he often misses school for lack of money. Nevertheless, Shahadat excels academically, his mother proudly states.

Nasima reveals that her husband's income from rickshaw driving barely sustains their family of four. 

She enrolled Shahadat in school because he aspired to study. 

Yet, they can't afford a doctor's visit or even provide him with a proper meal. Occasionally, he falls ill, adding to their distress.

Nasima shares, "We don't even have our own house. A few years back, I purchased this house on government land beside the highway and started living here. When it rains heavily, the house gets inundated. I'm constantly fearful of a vehicle losing control and crashing into our home."

Contacted, the school's principal, Nasima Akhtar, said Shahadat wasn't admitted to Sarkar Hat Government Primary School due to his disability. 

The school is already over capacity, she noted, and they cannot accommodate a child with disabilities.

Medical experts assert that children with progeria face no mental impediments. 

While their physical growth is abnormal, their intellectual growth remains unaffected. They excel in academics.

Shahadat's battle against progeria began six months after his birth at the Chittagong Medical College Hospital in 2014. 
His mother noticed his skin becoming loose and discoloured. 

Subsequent visits to the hospital confirmed the grim diagnosis: progeria.

Dr Zebin Chowdhury, associate professor of Child Health at the Chittagong Medical College Hospital, explains that progeria is essentially premature aging, originating from genetic anomalies. Infantile progeria, a rare condition, arises from abnormal cell mutations during fetal development. 

Symptoms manifest one to two years post-birth.

Dr Zabin Chowdhury outlines the symptoms: stunted growth, fat loss, wrinkled skin, disproportionately large head, and premature tooth loss. 

Yet, children with progeria progress normally in their mental growth. They exhibit agility and intelligence, excelling in education if interested.

Tragically, progeria takes a toll on the heart and brain, often leading to age-related heart attacks or strokes between the ages of 15 and 20. 

Although there's no complete cure, certain cancer drugs can mitigate the aging process, extending a patient's lifespan. 

Remarkably, there's a documented case of a progeria patient living to 42 years, she added.

To date, no progeria cases have been reported in Chattogram, according to Dr Zebin. 

Shahadat is likely the first diagnosed in the area, she added.

The Progeria Research Foundation, an international charity active in Bangladesh since 2019, reveals that only one in a million children grapple with this condition, causing them to age 8-10 times faster than normal.

In Bangladesh, three progeria cases have been identified, a minuscule fraction of the estimated 180 cases worldwide. 

The organisation believes the actual number of cases in Bangladesh is 2-3 times higher relative to the population.

While treatment doesn't offer a complete cure, it can significantly improve patients' quality of life. 

Unfortunately, this treatment is prohibitively expensive for Shahadat's father, a rickshaw puller.

Nasima implores for her child not to succumb to this unforgiving condition without a fight. She prays for a few more days of laughter and light in her child's life, urging the government and those with means to step forward and provide the needed medical assistance.