Jins Antony and Grace Janilet from Ayur in Kerala are in a race against time, seeking a cure for their firstborn, Jion. They are acutely aware that unless medical science expedites its efforts to find a miracle drug for their child’s worsening condition, he will die soon. Jion, 10, suffers from Duchenne muscular dystrophy (DMD), a genetic disorder characterised by progressive muscle degeneration and weakness. “This condition arises due to alterations in a protein called dystrophin, which helps maintain muscle cell integrity,” says Antony, 42, who runs a paint shop. DMD can affect all kinds of muscles, including the diaphragm—the muscular partition separating the thorax from the abdomen, and which aids breathing. And, that makes it fatal. “Currently, there is no definitive cure for this rare disease,” says Antony, adding that time is running out for Jion, “as Indian DMD patients rarely survive beyond 20 years”.
In the past, Jion, like any other kid his age, would run and play around. But these days, he struggles to walk without support. His eyesight, too, has diminished in recent years. At school, while other children play, he sits and watches them. He does not join them for fear of falling and breaking his bones. He still rides his bicycle, but is unsure if he can continue his favourite activity for long.
DMD is caused by a mutation in a gene that encodes the dystrophin protein, and is located in the X chromosome. Since the gene is tied to the X chromosome, DMD usually affects individuals assigned male at birth—since they have XY chromosomes, they receive only one X chromosome from their mothers and therefore have no other functioning gene to compensate.
This story is from the {{IssueName}} edition of {{MagazineName}}.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
Already a subscriber ? Sign In
This story is from the {{IssueName}} edition of {{MagazineName}}.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
Already a subscriber? Sign In
William Dalrymple goes further back
Indian readers have long known William Dalrymple as the chronicler nonpareil of India in the early years of the British raj. His latest book, The Golden Road, is a striking departure, since it takes him to a period from about the third century BC to the 12th-13th centuries CE.
The bleat from the street
What with all the apps delivering straight to one’s doorstep, the supermarkets, the food halls and even the occasional (super-expensive) pop-up thela (cart) offering the woke from field-to-fork option, the good old veggie-market/mandi has fallen off my regular beat.
Courage and conviction
Justice A.M. Ahmadi's biography by his granddaughter brings out behind-the-scenes tension in the Supreme Court as it dealt with the Babri Masjid demolition case
EPIC ENTERPRISE
Gowri Ramnarayan's translation of Ponniyin Selvan brings a fresh perspective to her grandfather's magnum opus
Upgrade your jeans
If you don’t live in the top four-five northern states of India, winter means little else than a pair of jeans. I live in Mumbai, where only mad people wear jeans throughout the year. High temperatures and extreme levels of humidity ensure we go to work in mulmul salwars, cotton pants, or, if you are lucky like me, wear shorts every day.
Garden by the sea
When Kozhikode beach became a fertile ground for ideas with Manorama Hortus
RECRUITERS SPEAK
Industry requirements and selection criteria of management graduates
MORAL COMPASS
The need to infuse ethics into India's MBA landscape
B-SCHOOLS SHOULD UNDERSTAND THAT INDIAN ECONOMY IS GOING TO WITNESS A TREMENDOUS GROWTH
INTERVIEW - Prof DEBASHIS CHATTERJEE, director, Indian Institute of Management, Kozhikode
COURSE CORRECTION
India's best b-schools are navigating tumultuous times. Hurdles include lower salaries offered to their graduates and students misusing AI