On 25 March 2010, in a hospital in Kerala’s Thiruvananthapuram, Sheeja gave birth to her daughter, Sandra.
Within hours, doctors delivered a diagnosis that would reshape the next sixteen years of her life. Sandra had microcephaly, a rare condition in which the brain does not develop sufficiently. Many children born with it do not survive.
Sandra did.
However, survival, Sheeja would learn, was only the beginning. What followed were years that blurred into one another, filled with hospital corridors, ICU rooms, ventilators, and the constant cycle of seizures that sometimes struck twenty times a day.
Medication was non-negotiable, expensive, and tireless. So was care. Somewhere within that cycle of urgency, Sheeja says she stopped recognising the life she had once imagined.
“It is a birth defect. We could not do anything, and we accepted it as fate. But it broke me,” she says simply, as if naming something that had taken years to understand.
At home, the strain intensified at first and then all at once. As medical bills mounted and caregiving became a full-time responsibility, her marriage collapsed. Her husband eventually left. But Sandra stayed, and so did the caregiving.
What Sheeja did not yet have words for was what she was beginning to see everywhere around her. There were other mothers, each carrying similar stories and each learning to disappear into them.
Early life before the diagnosis
Before Sandra’s birth, Sheeja’s life had followed a more ordinary pace. She studied in Thiruvananthapuram, attended Manchadi Government LP School and later St Xavier’s School in Peyad. She was drawn more to sports and social work than textbooks, and married during her degree course with the understanding that she would continue studying afterwards.
Sandra changed that trajectory completely.
⁠In India, women shoulder nearly three times more unpaid care work than men, making mothers of children with disabilities especially vulnerable to financial hardship after leaving paid jobs.
The hospital became a second home. Days were framed in admissions and emergencies rather than hours or months. Over time, Sheeja completed her degree and teacher training, but formal employment remained out of reach.
She turned instead to tailoring and other work from home, supported at defining moments by her parents, Babu and Usha, who helped care for Sandra whenever they could.
That support, however, was not something she could assume others had.
“In government hospital wards, I began noticing a pattern that unsettled me more with each visit. Mothers were sitting alone beside children with disabilities. Some spoke of husbands who stopped coming after the diagnosis. Others had already been abandoned entirely,” she tells The Better India.
It was in these waiting rooms that Sheeja first met Vidya.
Slow disappearance of identity
Vidya had once been a mathematics teacher at a private school in Kerala’s Attingal. Her son, Aadi, is now nine years old and lives with cerebral palsy. The diagnosis did not just alter her family’s routine. It gradually ended her career.
“I kept thinking I would go back after a year,” she says. “Then the year became three, and then it became never.”
Work was replaced by caregiving. Her identity gradually narrowed to medical charts, therapy sessions, and hospital visits. When she eventually met Sheeja at a hospital, what struck her most was not sympathy, but recognition.
For many caregivers, the biggest cost of disability is not medical treatment alone but the income lost when one parent is forced to become a full-time caregiver.
“People used to ask me what I did,” Vidya says. “Now they only ask what is wrong with my son. I became his condition instead of staying myself.”
It was a feeling Sheeja was beginning to recognise in herself as well.
Hospital corridors and the breaking point
The idea that would eventually become ‘Snehasandram Charitable Trust’ did not arrive as a plan. It accumulated, incident by incident, over years spent in hospitals.
There were moments Sheeja still returns to unwillingly. A couple she knew, overwhelmed by the prospect of lifelong care, attempted suicide along with their disabled child. The parents did not survive. The child did. Today, the child is being raised by the grandmother.
Another time, a mother she had met briefly handed her disabled child to Sheeja in a hospital corridor, said she would return shortly, and walked away. She went to the fifth floor and did not come back down.
“These are not isolated stories,” Sheeja says. “They are the ones you hear about. Most are never spoken of.”
What stayed with her most was grief and the absence of anyone consistently standing beside these mothers.
⁠In Kerala, one family’s donated stack of old newspapers can help fund medicines, wheelchairs or emergency supplies for another family caring for a child with disabilities.
That absence became the foundation of Snehasandram.
Building trust for mothers alone
When she registered the Snehasandram Charitable Trust in August 2021, she made a decision that defined everything that followed — though its roots trace back further, to the years Sheeja spent moving between hospital wards. Membership would be open only to mothers raising children with disabilities.
She believed only they could genuinely understand one another without explanation.
The trust began with something deceptively humble. It began with work.
It started offering sewing machines, tailoring training, and livelihood support through activities such as goat and poultry rearing. The aim was not charity in the traditional sense, but stability.
“We never wanted them to depend on us. We wanted them to stand on their own again,” Sheeja says.
Among the first to experience this shift was Shailey.
Shailey and the end of waiting
Shailey, 35, spends most mornings stitching blouse pieces in a small shared workspace supported by the trust. Her daughter has Down syndrome, and for years her life was defined by waiting. She waited outside special schools, waited for therapy sessions to end, and waited for a moment that belonged to her alone.
“I used to sit outside the school gate for four hours because there was nowhere else to go,” she says. “I could not leave her, and I could not work.”
Homeschooling has become an important alternative for some children with complex medical needs, allowing learning to continue despite frequent hospital visits or unpredictable health conditions.
The trust changed how she spent those hours. They became working hours. Slowly, she began earning enough to cover part of her daughter’s physiotherapy expenses.
“Last month, I paid for my daughter’s physiotherapy myself, without asking my father,” she explains.
Rini and the gradual form of abandonment
As the community grew, its response to crises grew with it. Members stepped in to arrange medicines when families ran out, source wheelchairs when mobility became urgent, and deliver diapers, food supplies, and other emergency essentials whenever they could. They held the network together not through formal structures, but through a shared sense of urgency.
It is within this growing web that Rini’s story sits. Her husband did not walk away overnight. He left gradually. First, by coming home late. Then, by taking a job in Kochi. Then, by sending money for a few months. Then by stopping contact altogether.
“He just faded away over time, and somehow that hurt more than if he had left,” she says.
Her son lives with autism, and like many women in the group, she came to Snehasandram after years of struggle rather than one dramatic collapse. What she found was a room full of women who already understood.
A growing community and an unfinished dream
Today, Snehasandram supports more than 200 mothers across Thiruvananthapuram and nearby regions, including families in the Kottoor tribal settlement.
⁠Down syndrome, cerebral palsy, autism and microcephaly may all require long-term care, but each condition affects development differently and demands highly individualised support.
The trust operates from a humble office in Pappanamcode, but much of its work happens in homes, hospitals and informal support networks.
One of its most unusual lifelines comes from donated newspapers and magazines, collected from households and sold as scrap, with the proceeds used for emergency support for mothers. Over time, individual donors and CSR funding have added to this ecosystem, though the need continues to outpace resources.
A 20-cent land donation in Thiruvananthapuram has now opened the possibility of a rehabilitation centre where children with disabilities can live alongside caregivers, allowing mothers to work without having to choose between earning an income and providing care.
The estimated cost, around Rs 40 lakh, remains out of reach for now, but the vision remains unchanged.
Sheeja Sandra and what survival looks like
Sheeja has since added her daughter’s name to her own. She is now Sheeja Sandra, a decision she describes as permanence rather than symbolism.
Looking at what has grown from hospital corridors into a network of more than 200 mothers, she does not speak in the language of achievement. She speaks instead of shared survival.
“We are mothers who have failed life’s test again and again,” she says. “But every time we manage to help one another stand, that is a small win.”
⁠Down syndrome, cerebral palsy, autism and microcephaly may all require long-term care, but each condition affects development differently and demands highly individualised support.
Outside her office, life continues in its uneven tempo, with calls from hospitals, requests for diapers, and urgent needs that cannot wait for planning.
Inside, what holds it together is simpler: mothers who once sat alone in hospital corridors no longer have to do so.
Sheeja Sandra and what survival looks like
Sheeja has since added her daughter’s name to her own. She is now Sheeja Sandra, a decision she describes as permanence rather than symbolism.
Looking at what has grown from hospital corridors into a network of more than 200 mothers, she does not speak in the language of achievement. She speaks instead of shared survival.
“We are mothers who have failed life’s tests again and again,” she says. “But every time we manage to help one another stand, that is a small win.”
Outside her office, life continues in its uneven tempo, with calls from hospitals, requests for diapers, and urgent needs that cannot wait for planning.
Sandra, now sixteen, is a homeschooler studying under the Snehasandram Trust. While her seizures present themselves on the regular, she says she has support from all sides. “I don’t feel alone in this journey and neither does my mother. There are other women to support us and that’s what matters,” she said.
A typical day in Sandra’s life including classes, studies and lots of curiosity-driven research she conducts using books independently. “Books are non-judgmental and I find solace in them,” she explains.
For Sheeja, Sandra remains her pillar of strength — a constant reminder of how far she has come, not only in building a life for herself, but in creating one for the many other families who once had nowhere to turn. “I can’t believe we have come so far, but it is very fulfilling,” she says, before rushing back to the administrative work that keeps the trust running.
It is a small, ordinary detail, but it is also the whole story in miniature: the mother-daughter duo for whom a diagnosis once emptied a room of possibility are now, in their own ways, part of the reason that room stays full for many others. Inside, what holds it together is simpler: mothers who once sat alone in hospital corridors no longer have to do so — and neither, anymore, is Sheeja.
