‘I am not powerless'

When Kerala’s Class 9 students opened their Malayalam language question paper, it featured a poem Tanicchirikkumbol (When I am Alone). The lines spoke of silence, loneliness​ and the clarity that settles when one is alone. Lakhs of teenagers writing the exam across the state were unaware that they were reading a young poet, P. A. Seba.

In the same year, 2023, Seba published Viral Pazhuthile Aakashangal, a book of reflections, poems and visual expressions. Here too the lines were drawn from her life with spinal muscular atrophy (SMA) – a rare genetic condition that causes muscle weakness. It has no cure. Patients with SMA slowly lose control of their bodies, and eventually even breathing must be done by a tube.

Neither the students writing the exam, nor readers in far-off places knew that the author had never left her room in years. She had penned those lines as she lay flat with a tube in her windpipe. For more than six years​, Seba has breathed through a tracheostomy tube. She cannot walk, sit up, or swallow without strain.

The 27-year-old Seba has used her mobile phone to type out a creative universe. In 2018​, she began posting her work online, created on the five-inch mobile screen that she operated with great effort.

P. Venugopal discovered her work ​on social media. “There is sharp steel in her words,” says the Thiruvananthapuram-based journalist. “She writes like someone who has lived a hundred years and yet remains tender.” Even today he helps her type and edit when she is too exhausted. “She writes in Malayalam and English with equal beauty. I only lend my fingers when hers are tired.”

Her notes on hope titled, Trapped in a cage but words break free, appeared on the front page of the Telegraph on New Year’s day in 2023. Editor R. Rajagopal had noticed her writing on Facebook and wanted to carry it. Soon after, her Malayalam writings were compiled into the book Viral Pazhuthile Aakashangal (Skies seen through the spaces between fingers). Kerala’s Industry Minister P. Rajeev released it at the Ernakulam Press Club in January 2023. She watched the event from her room on her mother’s phone.

“She kept saying, ‘Look amma, my sky is reaching other people’,” her mother Sabira told PARI.

Seba was barely a year old when she was diagnosed with spinal muscular atrophy (SMA). Her parents noticed that her legs could not support her weight. “She was such a bright child,” her mother Sabira recalls. “She spoke early, remembered songs, and understood things quickly. Her mind was always faster than her body.”

We are in a small, sunlit room in the family’s modest home in Panayikulam on the outskirts of Aluva town in central Kerala. Her father Abdul Salam joins the conversation saying, “people assume that children with SMA have cognitive issues. That is the biggest lie. Seba learns faster than any of us.”

Salam drives a taxi that he bought after years working in the Gulf region. His savings also bought a home for the family.

Seba’s medical expenses are also supported by her brother who works abroad. Her daily care is managed completely by her mother who must remain by her daughter’s side around the clock.

When Seba was a young girl, she was taken to school in a wheelchair pushed by her father. Teachers helped lift her when there was no ramp.

She excelled in academics and at the age of 17 she joined St. Xavier’s College in Aluva for a ​​B.Com degree, imagining a campus life she had seen only in films. That dream ended abruptly in 2017 when she caught pneumonia. The infection caused respiratory failure. An emergency tracheostomy saved her life, but left her permanently bedridden.

“I still remember bringing her home,” says her aunt, Sahida Sharjimon. “We told her it was temporary. We did not know then that she would never walk through those gates again.”

Daybreak gently enters her room in the single-storeyed house. The light falls across the steel cot where she lies. The oxygen concentrator is humming – the steady noise of the machine has become a part of her life. Sabira often steps in to adjust the tracheostomy tube, and wipe the moisture collecting near the bandage, and check the humidifier.

“Every morning feels like a blessing we fought for,” Sabira says to PARI.

After covid-19 hit, Seba now needs 24/7 oxygen support, BiPAP therapy​, and regular suctioning. A power failure can be deadly. “We live looking at the voltage on the meter,” her father says.

SMA is estimated to affect several thousand people across India, and around 3,000 to 4,000 children are born with the condition in the country every year. But exact numbers remains uncertain due to the absence of a national patient registry.

Many cases remain undiagnosed or unrecorded, particularly in rural and resource-poor regions. As a result, the true scale of the disease burden is believed to be significantly higher than current estimates.

India began thinking of rare diseases like SMA only as recently as 2017. A few years later, the National Policy of Rare Diseases 2021 was finalised. It says, “There are between 7,000 to 8,000 rare diseases, but less than 5 per cent have therapies available to treat them. Where drugs are available, they are prohibitively expensive.”

Gene therapy drug Zolgensma is priced at around Rs.16 crore; A single injection of Spinraza costs around Rs. 70,000, and a treatment with Risdiplam will mop up Rs. 45,000 in a month.

“These are not luxury medicines. They are life-saving,” says Dr. Razeena Sethunath, Kerala State Coordinator for Cure SMA India. Indian families struggled to get crowdfunding, often unsuccessfully.

Seba learned through her interactions with other patients and from reading, that the price of medicines varies sharply across countries. She says there are serious gaps in the ethics and policies around affordability, fairness, and the need for stronger price control measures or compulsory licensing for rare-disease medicines.

So she approached the courts seeking ​the removal of the Rs. 50 lakh cap in the National Rare Disease Policy. She argued that the government should use patent law provisions to ensure affordable generics.

“Access to treatment,” she wrote in an affidavit, “should not depend on a patient’s wealth, nationality​, or an estimate of their future productivity.”

Advocate Gopakumar, a local resident and friend of Seba's father volunteered to help. He remembers her clarity. “She told me, ‘I am not fighting as a victim. I am fighting because the law must work for people like us.”

Seba’s eyes open slowly. Her breathing settles a little. Her hand reaches for her mobile phone, which lies next to her pillow. Her fingers are thin and curved and cannot hold a pen. They hover over the screen. She opens the notes app and types a single line. She pauses to swallow, to rest her hand.

Her father, Abdul Salam, watches her from the doorway. “You will not believe how much effort goes into each sentence she types,” he says. “When I see her writing, I feel like even the disease steps aside for a moment. She fights every breath and still uses that breath to create something beautiful.”

Despite this exhausting daily routine, Seba is an active part of a collective of SMA patients organised under the Cure SMA Foundation of India, a national patient-led advocacy group working on awareness, treatment access and policy support. They communicate by phone with each other.

Many of Kerala’s SMA patients and their families also connect through disability rights networks such as the Mobility in Dystrophy (MIND) Trust, which includes people living with SMA and muscular dystrophy. They often serve as the first point of contact for families seeking medical, emotional and financial guidance after diagnosis.

Acting on a petition filed by Seba, on February 6, 2025, the Kerala High Court ordered a temporary supply of Risdiplam​, an oral medicine used to treat spinal muscular atrophy. Seba received the drug from Roche​, a global pharmaceutical and diagnostics company based in Switzerland that develops and markets​ patented medicines for rare diseases, at prohibitive prices.

Her condition stabilised over the 20 months she was taking the medicine. However, on February 24, 2025​, the Supreme Court stayed the Kerala order after the Union government appealed. Seba’s life saving drug was stopped abruptly.

“She looked at me with fear I had never seen,” V.K Shahina ​recalls. “She whispered, ‘Will I go back to how I was’?” Shahina is her aunt, a teacher and ​a Malayalam poet.

While the case remained pending, events in another courtroom changed the national landscape.

Natco Pharma​, a Hyderabad-based Indian pharmaceutical company that manufactures generic medicines, including affordable versions of high-cost specialty drugs, developed an Indian generic version of Risdiplam. Roche went to court to block it. The Delhi High Court allowed Seba to be impleaded as an affected patient.

​Despite the monopolistic patent company's best efforts, the court refused to grant Roche an interim injunction. Natco quickly launched its generic at around ​Rs. 15,900 a bottle – a fraction of the Rs. 6 lakh that Roche had charged. With discounts, Natco’s price went down further.

“When we heard the [fall in] price, several parents cried on the phone,” Dr Razeena says. “This was not just a market event. It was our children’s lives.”

Seba watched the development with quiet satisfaction. “This,” she typed, “is what justice should feel like.”

In March 2026, the Supreme Court will take up the case. Seba has also petitioned the Kerala government to push the Union government to make these medicines free for all SMA patients.​ According to her, the government must stop overcharging by the pharma companies and procure supplies using its funds to supply to the victims, who are very few at the national level, but extremely poor.

Activist Poorva Mittal says, “The government has the power to fix this. It cannot leave patients at the mercy of corporate pricing.”

Meanwhile, life in Seba’s room continues at a fragile pace, fraught with anxiety. Her mother sterilises surfaces; Her father watches the power supply. Shahina handles the machines when Sabira needs a break. Nurses come daily. ​

“She smiles as if it’s all ok,” Shahina says. “But I know how much it hurts.”

Writing is slow and often limited to a sentence a day. Painting is done when the light is good. She speaks to newly diagnosed families on video calls, offering comfort born of lived experience. ​ “As long as I have words,” she says, “I am not powerless.”

In the evenings when the sky outside her window turns to gold, she asks her mother to tilt her cot so she can see better.

Near her bed lies a framed copy of the Class 9 examination paper that carried her poem. She looks at it sometimes in gentle disbelief.

“When I think of those children reading my poem,” she says, “I feel like I have left my room for a few moments.”

Her sense of humour survives even on difficult days. Sabira remembers a morning when Seba pulled a dramatic face while wearing a new T-shirt, pretending to be in pain. When her mother rushed to her side, Seba burst out laughing.

“She plays small pranks like that,” Sabira says. “Even on days when she has barely slept.”

Shahina recalls bringing her news of her poem featuring in an exam paper. “A friend forwarded me a photo of the question paper, I showed it to Seba,” she says. “She stared at it for a moment as if she could not believe it. Then she burst into laughter. For a whole day​, she forgot her pain.”