The Story Of Arjun

EPISODE 1: THE MOMENT BEFORE KNOWING

The first thing she wants you to know about her son is not the wheelchair.

It’s the cricket commentary.

Arjun is eight. He will sit for hours narrating imaginary matches to himself, ball by ball, over by over, complete with replays and heated debates about umpiring decisions. He’s sharp, funny, and a little bossy with his younger sister, who is 4. People who meet him for the first time notice him first. The wheelchair comes second, if at all.

There is a particular kind of knowledge that no one wants to acquire. Not medical knowledge, not technical knowledge, the knowledge of how to go on living when the ground beneath you has turned out to be less solid than you assumed. This is what families who receive a diagnosis of Duchenne muscular dystrophy learn, whether they wanted to or not. And what is striking, listening to a mother in Delhi describe her son Arjun (pseudonym), is how much of this learning has nothing to do with medicine at all.

Priya noticed it when Arjun was three and a half. The falling didn’t alarm her at first; small children fall, it is practically their occupation. What stayed with her was how he got back up.

He would roll onto all fours, then press his hands against his shins, then his knees, walking his palms slowly up his own legs as though using himself as a ladder. It looked effortful in a way that seemed wrong, though Priya could not have said precisely why. When you are a first-time mother, you constantly second-guess your instincts.

The family doctor in Lajpat Nagar said low vitamin D, which, as she puts it, “is what doctors here say for everything.” Two years of that. Two years of being told not to worry.

She still can’t get those years back. Some mornings, she’s still angry.

It was Arjun’s nursery teacher who finally redirected them. Twenty-two years of working with young children, and she had developed the kind of peripheral attentiveness that is perhaps the closest thing we have to clinical training outside a clinic. She pulled Priya aside and said that she thought it was worth seeing a pediatric neurologist. Not a GP, a specialist. Priya has thought about that conversation many times since. The nursery teacher gave her something the doctor had withheld: permission to know what she already knew.

At AIIMS, a blood test revealed drastically elevated creatine kinase, the enzyme that leaks into the bloodstream when muscle fibres break down, like smoke from a fire burning somewhere out of sight. Then a genetic test. Then a wait of several weeks, as Priya describes it, “existing rather than living.” Then a room, a doctor, a husband with a notebook, and a small boy eating a biscuit from his mother’s bag, entirely unaware that the room had a different gravity than the rooms before it.

Duchenne muscular dystrophy. A mutation in the dystrophin gene, a progressive disease. Currently, without a cure.

The doctor was not unkind. He answered every question written in the notebook. He explained the genetics with precision and the trajectory with honesty. What he could not provide, because it is not something medicine has a protocol for, was time, time to let the words settle before they meant everything they were going to mean. Priya was not writing in any notebook. She was looking at Arjun and at the biscuit crumbs on his shirt, thinking something she would not quite say directly, but I think amounts to this: she wanted to stay a little longer in the moment before knowing. Because knowing, once it arrives, cannot be undone. And the moment before it is the last moment of a particular kind of innocence, not ignorance, but the innocence that comes from not yet having been asked to carry something this heavy.

This is where most stories about illness begin. With the diagnosis. With the room, the doctor, and the notebook. As though the story starts there.

It doesn’t. It starts with a mother watching her son get up off the floor, and trusting something she couldn’t yet name. That is where it starts. That is always where it starts.

EPISODE 2: THE RAMP HE BUILT WITHOUT ASKING

“But, I still ask, why my child?” She told me during the interview.

DMD is, among many other things, a condition that makes architecture personal.

The flat in Dwarka, on the second floor, chosen years before for its light and its proximity to a good school, became, after the diagnosis, a negotiation between the life they had imagined and the one that was arriving. Stairs became mountains. Doorways expressed reluctance. The building society was approached about a ramp. There were meetings scheduled and then postponed, letters written and not replied to, a particular bureaucratic experience that Priya describes as being made to justify, again and again, a need that should require no justification. Eventually, her husband Vikram built a wooden ramp himself and placed it at the building entrance without asking permission. Nobody objected. “Sometimes,” Priya says, “the best advocacy is just doing the thing and waiting to see if anyone stops you.”

The ramp became a small neighbourhood legend. Three other families in the building had since used it, an elderly woman recovering from a hip replacement, a man who’d broken his ankle, a delivery boy with a trolley full of water cans. Priya finds this neither ironic nor gratifying, exactly. It is simply what happens when you build something that meets a real need. The world is full of people quietly waiting for someone else to build the ramp.

Arjun started physiotherapy twice a week with a woman named Dr Malvika, who has the particular quality that good physios and good teachers share: she treats the body in front of her as though it is the only body she has ever worked with. She taught Priya stretches, positioning, and breathing techniques. She also taught her, though it was never explicitly stated, the difference between accepting something and surrendering to it. These are not the same. Acceptance is active. It requires you to keep your eyes open.

Steroids began at six. The standard protocol for DMD now involves corticosteroids, which slow the progression, buy time with muscle function, preserve the ability to raise a hand, to breathe more easily, and to go on playing cricket. Priya weighs the pills in her palm each morning, the same gesture repeated so many times it has become a kind of ritual — not quite prayer, not quite medicine, something in between. There are side effects. Weight gain, which other children notice and sometimes comment on. Priya handles these moments with a precision she has developed over the years: she corrects, clearly and without anger, and moves on. She does not let Arjun watch her face afterwards.

The school is a chapter by itself.

The mainstream school they had chosen, which had seemed good, progressive, was built on the premise that inclusion was a value, while being organised entirely around a body that could manage stairs, crowded corridors, sports days, and bathrooms designed for people who don’t need handrails. The gap between what schools say and what they build is one of the more politely maintained fictions in Indian middle-class life. Priya learned this the hard way, in a series of meetings where the word “unfortunately” was used so often it began to sound like punctuation.

The school they eventually found, smaller, less prestigious by the conventional metrics, had a principal who, at their first meeting, asked Arjun what he thought was wrong with the school’s cricket commentating at sports day. Arjun told her, in detail, for approximately twelve minutes. She offered him a position. He has held it ever since, microphone and all.

Vikram handles things differently from Priya. This is neither a criticism nor a surprise; people who love the same person do not necessarily grieve or fight or endure in the same register. Vikram researches. There are clinical trials in Germany and America, gene therapies in early stages, exon-skipping treatments that work for specific mutations and not others. He has a spreadsheet. He sends Priya links late at night, which she reads and files without always responding. She used to find this difficult; now she understands it as his version of the same thing she is doing, which is refusing to stop.

They do not always agree on what hope looks like. This is possibly its own form of intimacy.

Arjun’s sister Meera is four. She has the kind of fierce, watchful love that younger siblings of children with serious illnesses sometimes develop early, as though she has understood something about impermanence that most people her age haven’t yet reached. She brings him things. She argues with him over the television remote with a normalcy that Priya finds, more than almost anything else, fortifying. Meera doesn’t know the medical terminology. She knows her brother, and she has decided, apparently, that he is mostly annoying and sometimes perfect, which is, all things considered, exactly right. He is, afterwards, her brother.

EPISODE 3: REFUSING TO STOP

But how do you treat a grieving heart?

The new treatments are real, and they are coming, is what the doctors say now.

Eteplirsen, casimersen, viltolarsen, names that sound like nothing so much as spells being cast in a language still being invented. Some work for some mutations. Arjun’s mutation is one for which options are limited but not absent. The word “promising” appears in many sentences. Priya has learned to hold promises carefully, as if they might break. She has learned this without becoming cynical, which is, in its quiet way, an act of enormous will.

India, too, is moving. Slowly, imperfectly, but moving. AIIMS has been expanding its genetic counselling services and rare disease clinics, offering families the kind of post-diagnosis infrastructure that did not exist a decade ago. The Indian Council of Medical Research has listed Duchenne among the rare diseases prioritised under the National Policy for Rare Diseases, which came into effect in 2021 and provides financial assistance for treatment at select Centres of Excellence across the country. At AIIMS Delhi, PGI Chandigarh, and NIMHANS in Bengaluru, specialists are no longer learning about DMD from textbooks alone. They are seeing children, running trials, and connecting families to research networks. The government has also mandated the creation of a National Rare Disease Registry, which, when operational, will, for the first time, give researchers actual numbers, how many children, where, and with which mutations.

None of this is enough. Families will tell you this plainly. The distance between policy and practice remains large, and in a country of this size and complexity, large distances can swallow lives. Financial assistance reaches those who know how to apply. Centres of Excellence serve those who can travel to them. Early diagnosis requires awareness, in primary care doctors, in nursery teachers, in parents themselves, and awareness requires information that has not yet fully filtered through.

This is the part that matters most and costs the least: knowing what to look for.

Gowers’ sign, that particular, heartbreaking way of getting up off the floor, hands walking up the legs, body serving as its own ladder, is visible to anyone who has been told to look for it. Persistently elevated creatine kinase in a child who falls often, who tires easily, and who climbs stairs one at a time is detectable with a blood test that costs very little. The window between first symptoms and diagnosis in India is still, on average, years. Priya’s two years of being told it was vitamin D are not an anomaly. They are the norm.

What narrows that window is not technology. It is attention. A doctor who pauses. A teacher who notices. A parent who trusts what she sees in her child’s body, even before she has words for it.

There is now a support network of Delhi families around Priya, loosely organised, mostly through phones. They share information about wheelchair mechanics, about schools, about which government offices actually process disability certificates and which ones lose the paperwork. They share information about the nights. There is a particular kind of text message that gets sent around two in the morning, from parent to parent, that says something like “awake again”, or “rough night”, or sometimes just a single emoji. The replies come fast, from other parents also awake. Priya says this is the part she did not expect: the community made from necessity that becomes something else, something that looks more like chosen family.

Arjun does not, at eight, have a fully formed understanding of what his diagnosis means for the future. He knows some things. He knows he tires faster than other boys. He knows his legs work differently. He knows he takes medicine every day. He knows about physiotherapy, which he dislikes but tolerates. What he does not yet fully know is the longer arc. Priya and Vikram have talked about when and how to tell him more, the way all parents of children with progressive illnesses talk about this, with care, with dread, with the awareness that there is no perfect moment and there is no version of this conversation that doesn’t ask something very large of a small person.

But Arjun is not only a small person with a difficult future. He is a small person with a furious love of cricket, a four-year-old sister he bossy-shepherds through life, a school that gave him a microphone, a mother who knows the difference between accepting something and surrendering to it, and a father who keeps a spreadsheet open at two in the morning because that is what love looks like for him.

The wheelchair is there. It is part of how he moves through the world.

It is not, she would like you to know, the first thing.

If you are a parent or educator who has noticed something in a child, a gait that seems wrong, a falling that seems different, a tiredness that doesn’t lift, trust that noticing. Ask for a specialist. The earlier the diagnosis, the wider the window for intervention. Awareness is not panic. It is the first ramp anyone can build.