It is barely 4am and the sun is yet to rise. However, for Pragna Ben, the day has already begun. She is in the kitchen busy preparing breakfast for her four children and husband. The 30-something housewife knows that if she is late by even a few minutes to serve the food, three of her children will start crying.
Even as she is mixing the dough for the chapattis, she lights the stove, after which she tries not to make too much noise as she washes some pans in her modest three-room house in Una village in the Western Indian state of Gujarat.
But the clanging of vessels rouses the kids – Yogita, six, Anisha four, and Harsh, two – who wake up crying.
Rubbing the sleep from her eyes, the eldest stumbles into the kitchen whining ‘Mama, I’m hungry. Give me something to eat.’
Pragna serves the first of the set of chapattis she has prepared to Yogita and gets busy making more. The three children’s unnatural hunger is because they suffer from a rare genetic condition called leptin receptor deficiency, which causes severe obesity right from infancy. Although of normal or even below-normal weight at birth, sufferers are constantly hungry and rapidly gain weight due to chronic excessive eating.
Experts believe there is no cure for the condition.
‘Doctors have told us that the disease can easily lead to dangerous weight gain, restricted growth, learning difficulties and behavioural problems such as temper tantrums or stubbornness,’ says Pragna. ‘But we are too poor to treat them and can only do our best by trying to satisfy their unnatural hunger pangs.’
An average day’s diet for the three children includes more than 20 wheat chapattis, 2kg of rice, 25 millet chapattis, about a kilo of vegetables, two large bowls of broth, six packets of crisps, five large packs of biscuits, several servings of fried snacks such as fritters, 18 bananas and two litres of milk and a litre of yogurt.
‘We had no idea that our children were suffering from a disease and it was only last year that we found out about this condition,’ says their father Rameshbhai Nadwana, 35, a daily wage labourer who earns around Rs300 (about Dh16) a day doing menial jobs such as digging wells or working as a porter in the nearby bus station. Their daughter Yogita weighed just 1.5kg at birth, less than the average weight of a newborn. ‘We were worried for her health. So we started feeding her a lot. Much to our surprise, Yogita bloated to 12kg by the time she turned one,’ says Pragna. Anisha also gained weight similarly, tipping the scales at 15kg on her first birthday.
The couple realised that the kids were suffering from the disease only when their youngest child, Harsh, too began to gain weight rapidly after birth.
Panicky, they sought medical help. The local doctors were unable to pin down the cause for the children’s condition so referred them to a hospital in the adjoining city.
There the children underwent several tests but doctors were still not able to identify the reason for their agonising hunger pangs.
‘When the kids would cry for food just after having a hearty meal, we used to get irritated,’ says Rameshbhai. ‘But we realised that there was a reason for their hunger, which was beyond their control, and soon began to come to terms with their problem.’
A reason for his frustration was the couple’s financial condition. ‘It’s difficult to find a regular job in my town, so I grab whatever comes my way – tilling the land, working as a mason, a porter… anything. Whatever I do the only thought on my mind is whether I’d earn enough to buy food for my ever-hungry children,’ says the father. ‘And if I do get some work, my next worry is whether I’ll be able to feed them the next day.
‘You know, it’s been years since I took my wife out for a movie. Our life has gone topsy-turvy.’ In May last year, the impoverished father, frustrated over his inability to help his children get proper medical treatment, announced that he was willing to sell his kidney to fund life-saving treatment for his three morbidly obese children.
The desperate plea of the poor parent whipped up a national and international media frenzy, prompting the Gujarat state government to step in and offer to take care of the children’s treatment.
The kids were taken to Ahmedabad’s Civil Hospital 350km away from their hometown in a special ambulance, where they underwent a weight reduction treatment at the facility in June, 2015.
‘We did a primary and genetic analysis of the children and found that they had monogenic obesity,’ says Dr Charul Purani, who treated the trio during their two-week stay at the hospital. ‘This is called leptin receptor deficiency, a condition that causes severe obesity beginning in the first few months of life.’ Affected individuals are of normal weight at birth, but they are constantly hungry and therefore quickly gain weight. The extreme hunger leads to chronic excessive eating [hyperphagia], and obesity.
‘Though it looked like Prader-Willi syndrome [a rare congenital disorder, as reported by several media] in the beginning, our investigations established it is a case of leptin receptor deficiency. Even the Cambridge University, which carried out a parallel genetic analysis on the kids, vindicates our report,’ she adds.
How did the kids contract this disease?
‘In layman’s language, their parents are half mutative and the children have complete mutations of the gene responsible for the condition. The couple’s eldest daughter Bhavika, who is seven years old, does not suffer from the condition and therefore weighs only 17kg, a normal weight for a child that old.
‘Last May, the obese kids were with us for two weeks. They were suffering from obesity-related morbidity. So we put them under a strict diet plan due to which they lost a lot of weight during a short span of time. But after they went back home, the family probably couldn’t maintain the strict diet plan, which would have resulted in eventual weight gain.
‘As of now we cannot help them much expect for dietary changes, lifestyle changes and physiotherapy. That’s the only assistance we can offer now. There are several other options – medicine or surgeries – but these are only for adults suffering from leptin receptor deficiency. So once the kids reach adolescence, we might perform surgery on them.’
But for now, the main concern for the family is to have the necessary funds to pay for the ever-increasing food bills.
In the two weeks that the kids stayed at the hospital, their weight fell by about 3-4kg each. But within a year, the siblings started piling the weight on again, and at a very fast pace: Yogita now weighs 37kg, Anisha clocks in at 56kg and Harsh weighs 20kg. An average child of their age should weigh 22kg, 16kg and 12kg respectively.
Except for Bhavika, none of the siblings go to school as they are too big to walk and manage on their own.
Yogita says, ‘When Bhavika dresses up in her blue-shirt and white-skirt school uniform, she looks so beautiful. I also want to dress like her and go to school with a school bag strapped on my back. But my mother says there would be nobody to carry me around in a cart or provide me food every now and then.
‘I want to go to school, but I cannot because of my weight. I want to run and play like other children in the neighbourhood. But they won’t play with me. Instead, they call us sumo babies because we are so big!’
The kids are distressed at the taunts they receive from strangers and even some neighbours.
‘After the diet control treatment, we were sure that the problem was solved,’says Rameshbhai. ‘But no, it was just the beginning. My kids have bloated since.
‘I don’t want to blame anybody. I have started looking for someone in need of a kidney transplant. I hope to generate enough money from that to fund my children’s treatment at a better facility.’ He often has to take loans from family and friends, up to Rs10,000 – the monthly food expenses of the family.
And their extreme hunger means their mother Pragna Ben, 30, spends most of her day cooking their meals.
She says: ‘My day starts with making 50 chapattis and 1.5kg vegetable curry in the morning. After that I am in the kitchen again to prepare more food during the day.’
Rameshbhai hopes to get around Rs1.2-1.5 million from the sale of his kidney so he can see top specialists and fund the children’s medication.
‘If the kids keep putting on weight like this, they won’t be able to move an inch in the coming days. I cannot see them dying in front of my eyes. I will do whatever is necessary to arrange funds for their medical treatment. If that requires me to sell my kidney, I won’t think twice,’ the father says.
Pragna pitches in: ‘The kitchen has become my living room now.
‘At times, I get really frustrated. But then I console myself saying: it is not the kids’ fault. They are suffering too, and for no fault of theirs.’