Mumbai boy with rare SSPE left bedridden as family seeks government support and medical aid

Shaurya Bhosale in a recent photograph before the onset of SSPE. Pics/By Special Arrangement

They were healthy children who played, laughed and went to school. Then came measles. Years later, some began falling, losing memory, changing behaviour - and slowly losing the ability to walk, speak and see.

After months, sometimes years, of searching for answers, tests confirmed the diagnosis: SSPE, a rare and progressive neurological disease linked to measles infection.

Parents have sold gold and land, exhausted savings and taken loans to keep their children alive. Many say government support has been little or non-existent.

Over nine days, mid-day tells the stories of these children and their families - and asks why they have been left to fight this battle largely on their own.

Shaurya playing as a child, before he was diagnosed with SSPE

FIVE years ago, Kalpana Jagtap-Bhosale watched her son walk into Junior KG like any other child - active, cheerful, and healthy. Today, nine-year-old Shaurya is bedridden, unable to see, speak or move independently.

A series of falls, buckling, memory loss, and sudden behavioural changes had begun when he was a young school-going child. He was later diagnosed with Subacute Sclerosing Panencephalitis (SSPE), a rare and progressive neurological disease associated with measles infection.

Jagtap-Bhosale says Shaurya's condition deteriorated rapidly. Within two months of his diagnosis, he became bedridden. For the past five years, the family has provided round-the-clock care while dealing with the cost of medicines, equipment and other support.

Now, she has approached the Maharashtra State Legal Services Authority (MSLSA), seeking help for Shaurya and other families dealing with SSPE.

Shaurya after being diagnosed with SSPE

Five years of care

Then:
Shaurya was attending Junior KG and leading a normal childhood.

Symptoms began:
Falls, buckling, memory loss and behavioural changes.

Diagnosis:
SSPE.

Within two months:
He became bedridden, according to his mother.

Today:
At nine, he requires assistance with basic daily needs and constant medical care.

‘The diagnosis completely changed our lives'

"The lively, cheerful child who once went to school and dreamed of a normal future has been reduced to an extremely fragile existence," Jagtap-Bhosale said in her representation.

"His presence in our home is now marked by silence and constant medical care and times howling in pain."

What the families are seeking

The representation to the legal services authority seeks help with:

• Monthly financial or maintenance assistance
• Free or subsidised medicines and treatment
• Medical equipment
• Physiotherapy and rehabilitation
• Nursing and other caregiving support
• Legal assistance in pursuing the pending PIL

The families say the continuing cost of care has exhausted their savings in several cases.
They also say there is no reliable statewide mapping of children living with SSPE and that families are largely left to manage the medical and financial burden themselves.

How many children are affected?

The representation refers to around 60 to 62 children with SSPE in Maharashtra.

However, a July 2025 letter from Maharashtra Public Health Minister Prakash Abitkar to the Union Health Minister, placed before the Bombay High Court, recorded 67 diagnosed cases in Maharashtra at that time.

Families have already approached the government

According to the families, representations have been made to the Chief Minister, Deputy Chief Minister and Public Health Minister.

They also held a peaceful protest outside Mantralaya seeking support for children with SSPE. The families say they are seeking a system that can help meet the continuing costs of medicines, specialised equipment, rehabilitation and care rather than leaving each family to manage the burden on its own.

The vaccination question

The representation also raises concerns about measles vaccination.

The families claim that around 90 per cent of affected children had been vaccinated against measles, while some were vaccinated late or had contracted measles at around six or seven months of age, before the standard vaccination schedule. The parents are questioning what responsibility the government bears in cases where children who were reportedly vaccinated subsequently developed SSPE.

They are seeking answers, but also government accountability and support for families now living with the consequences of the disease.

The case before the Bombay High Court

The families' representation also refers to PIL No. 119 of 2025, filed by Mahadu Lahanu Belkar before the Bombay High Court.

The petition seeks a policy for healthcare and welfare of people suffering from SSPE.

At a hearing on April 17, 2026, the court recorded that Maharashtra did not have a specific policy for SSPE and that the Centre had taken the position that SSPE was not covered under the National Policy for Rare Diseases because it is not curable.

The court directed the Centre to file a reply. According to the families, the matter was last taken up in April 2026 and has not been listed for further hearing since. The petition seeks, among other things, financial assistance for affected families and greater medical support.

What the mother wants from MDLSA

Jagtap-Bhosale's appeal is not limited to Shaurya's treatment. She wants the legal services machinery to help affected families understand and pursue the relief available to them and to assist in the pending court proceedings.

"Please do not let our children be forgotten"

"We are desperately seeking compassionate support and meaningful intervention so that children like my child are not forgotten," her representation says.

For Jagtap-Bhosale, the appeal comes after five years of caring for a child who went from walking into school to being completely dependent on others.

She is now asking for help with the cost of keeping him alive and cared for - and for a system that does not leave families dealing with a rare disease to fight the battle alone.

MDLSA: Limited role

An MDLSA official, requesting anonymity, said the authority had received Jagtap-Bhosale's representation and forwarded it to the Maharashtra District Legal Services Authority (MDLSA).

"We have received the letter written by Kalpana and forwarded it to the Maharashtra Legal Services Authority (MLSA). We have a limited role to play in the matter, as it concerns other authorities. Our hearts go out to the families, but there is little we can do beyond that," the official said.