Over the past year, 12-year-old Samia's life has undergone a significant change. In the capital's Korail slum, the child was born with cerebral palsy, a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination.

As a result, she spent most of her childhood bedridden, unable to sit or turn from side to side on her own.

But, now, she looks forward to every Saturday because it is the one day she gets to live the life of a regular child that she was previously deprived of.

For the past year, she wakes up early every Saturday, has her breakfast, and puts on her favourite red frock while her mother styles her hair into two ponytails.

She then waits for the dedicated volunteers to pick her up in a wheelchair and take her to "Ananda", a daycare centre that essentially serves as a respite care centre.

Along with Samia, other children arrive by 10:00am and slowly settle in. They mingle, play games, sing nursery rhymes together, and engage in various fun-filled activities. They also receive essential physiotherapy before being given snacks and lunch, all of it free of charge.

According to the latest National Survey on Persons with Disabilities-2021 by the Bangladesh Bureau of Statistics, the number of people with cerebral palsy in the country is approximately 136,800.

Around 96.34 percent of them have communication limitations; 96.64 percent lack balance; 89.32 percent have abnormal muscle stiffness or looseness; 90.97 percent have restricted hand or foot movement; 89.06 percent face behavioral issues; and 85.49 percent experience partial or full inactivity of hands or legs.

Children like Samia rely on dedicated volunteers or palliative-care assistants (PCAs) for support.

The assistants engage them in games, art projects, and interactive sessions, offering them a rare opportunity for social interaction and physical activities.

Ananda is an initiative of "Compassionate Korail," a community palliative-care centre run by the Palliative Care Society of Bangladesh (PCSB) since 2019.

This centre, also known as "Momotamoy Korail," offers home-based palliative care, essential medicines, assistive devices, and monthly food supplies to 304 patients, including 27 children, with conditions like cerebral palsy, congenital heart defects, cancer, and Down syndrome.

Dr Noorjahan Begum, senior specialist at Evercare Hospital and team leader at Momotamoy Korail, highlighted the struggle of children with cerebral palsy and other genetic disorders.

"Without proper medical support, they often remain bedridden and suffer continuous bouts of epilepsy. Meanwhile, limited access to medication exacerbates their conditions, resulting in severe physical disabilities such as rigid limbs due to lack of therapy."

Her study on caregivers for children with cerebral palsy in Korail found that over 97 percent of the caregivers are women, with 88.6 percent being mothers and 8.6 percent grandmothers. Around 80 percent reported that other family members rarely assist in caregiving.

Prolonged caregiving to children with mobility impairments significantly reduce the quality of life for primary caregivers, leading to higher levels of stress and conflict, which in turn impacts the quality of care and family relationships.

Realising their need for assistance, Momotamoy Korail proposed bringing the children to the centre for a few hours every week to provide relief to their caregivers and also give the children a change in environment.

After multiple meetings with guardians and community volunteers, the Ananda programme started in February 2023.

Every Saturday since then, all the 27 children, four at a time, are brought to the centre.

Every child receives personalised care from PCAs and volunteers, supported by a dedicated caretaker who ensures their hygiene and provides meals, including nutritious hotchpotch and fruit snacks.

"We maintain a registry book for parents to sign when dropping off and picking up their children. Feedback has been positive so far, and participation is entirely voluntary," said Dr Noorjahan.

AH Sabbir, a physiotherapist at the centre, noted positive outcomes, stating, "Many babies who previously didn't receive physiotherapy are now actively participating as the toys, games, nursery rhymes make it more engaging for them.

"We've seen improvements in their motor development; children with weak neck control can now hold their heads up, those who were unable to sit properly can now do so, and some are even learning to walk. Additionally, their cognitive development is progressing. Initially, they would sit quietly in fear, but now they have overcome that and interact with each other with ease."

Samia's mother, Fatema Begum, was reluctant at first to send her daughter to the centre due to concerns of unfamiliarity and the constant need for assistance.

"But after I saw familiar PCAs taking care of them and dedicated individuals for cleaning, I agreed. In the beginning, I would go and check on her often out of worry. But now, I have complete trust. This allows me to get with household chores and errands.

"It's great to see my daughter enjoying herself with others and making progress with her therapies. Parents like us, who struggle to provide even the basics, could never afford such facilities for our children."

Dr Noorjahan highlighted the primary challenge -- shortages in human resource, as it requires a constant supply of dedicated volunteers.

Dr Nezamuddin Ahmed, former chairperson of the palliative medicine department at Bangabandhu Sheikh Mujib Medical University and an advisor at PCSB, said, "Ananda might seem like a drop in the ocean, but it showcases how community initiatives can make a big difference for children with cerebral palsy, or other incurable chronic health issues, especially when government resources are limited.

"We should customise services to fit local needs rather than adopting models from wealthier nations, considering our lower per capita health expenditure."