Dressed in a short sleeveless blue frock, Ajifa Khatun doesn’t look a day older than two. Barely 78cm tall, the height of an average toddler, she rests comfortably in the arms of her 17-year-old sister, Rini, who is taking her to school.
Ajifa giggles as she turns to wave goodbye to her mother, Apila Khatun, who is standing on the doorstep of their house in Mirapur, a village in the eastern Indian state of West Bengal. “Ajifa loves going to school with her siblings,” says Apila.
“She enjoys playing with the little children there. She is also pampered by the teachers, who find her cute.”
Going to play at nursery would be fine if Ajifa was as young as she looks, but in reality she is 19. A rare genetic hormone disorder called Laron Syndrome meant that she stopped growing just before her second birthday, and will forever be trapped in a toddler’s body.
“She’s a delight to have around because of her childlike antics,” says her mother. “But it’s heartbreaking to see her like this, knowing she will never grow up.” Like other parents, Apila, 42, a homemaker and Sekh Wosel, 54, a plumber, had hoped to see their eldest daughter grow up and get married.
“Ajifa’s just like a toddler – she can only take a few baby steps and has to be carried everywhere. She has to be fed and can speak only three or four words including ‘maa’ [mother] and ‘baba’ [father],” says Apila.
Apila first noticed there was something wrong with Ajifa when one of her younger daughters, Rini, began to develop more quickly and was soon taller than her oldest girl, even though there was a two-year gap between them.
“Ajifa was four but her two-year-old sister was the same size and was mentally sharper than her.
“Although we are poor, we dipped into our meagre savings and took a three-hour bus journey to Serampore, a nearby town that has a large hospital, to consult a doctor.”
The doctor, however, couldn’t find anything wrong with Ajifa.
“He told us, “She will grow in time,” so we trusted him and left,’’ says Apila.
But over the next months and years, there was no change.
“It was extremely worrying to realise she wasn’t growing physically or mentally,” says Sekh.
“I didn’t know what to do or who to turn to because nobody could tell us why our daughter wasn’t growing up. I was frantic, worrying about what would happen to her in the future, whether her health would be affected, whether she would be able to lead a normal life...”
The couple took their daughter to see doctors in nearby cities’ clinics, but nobody had any answers.
By the time Ajifa turned five, she still looked like a two-year-old – moving on all fours like a toddler, making grunting unintelligible sounds and pointing at food when she was hungry.
She needed to be fed by her mother and there had been no development as regards her height, weight or intelligence.
Meanwhile, Apila gave birth to a third child, a daughter, Rabiya, who, like Rini, soon overtook Ajifa.
Apila and her husband took their eldest daughter back to hospital, determined to find out what was wrong. “We were desperate for answers and wanted to help our little baby,” says Apila.
This time, the doctor spotted an abscess on her daughter’s back and promptly concluded that it was a tumour and it was affecting her growth. He recommended a course of chemotherapy, which the parents immediately rejected.
“We weren’t convinced,’’ Sekh says. “Although I’m not very literate, I felt the abscess was not responsible for her condition. There had to be another reason. The doctors also told us that there was nothing they could do and that she had just a few months to live.
“We were devastated but I refused to believe them. For some reason, I knew it was ridiculous and that her problem was not related to a cancer of any kind.”
Keen to get a second opinion, the parents then took the girl to another doctor, but he, like all the others, couldn’t determine what was wrong.
“We came to a stage when we didn’t trust any of the doctors. None of them could give a proper reason for her condition,” Apila says. “Spending money on doctors was pointless. They were not going to help us. We decided it was best to go home and just live the best we can and hope for a miracle,’’
Fourteen years have passed since Ajifa was diagnosed with cancer and given just a few months to live.
Today, although Apila’s eyes well up when she sees her daughter struggling, she is grateful she is alive.
“I’ve stopped looking for answers,’’ she says. “She is 19 years old but looks like a baby – as a mother I am devastated, but what else can I do?’’
Two years ago a doctor visited their village when he heard about Ajifa’s condition.
After examining her and doing a series of blood tests, he told the family that Ajifa has a rare hormone disorder which has left her trapped in the body of a toddler.
“He also told us that there is no treatment available,” says Apila.
The experts who reviewed her case seem to agree she has Laron Syndrome, an extremely rare genetic condition that is believed to affect just 300 people across the globe.
Sufferers lack a hormone called Insulin-like growth factor 1 which stimulates cells to grow and divide to form new cells.
In the absence of this hormone, cells are unable to grow. There is no treatment that cures or prevents the disease. With age, patients may develop obesity and are at an increased risk for fractures.
Now the parents are just focusing on making sure their daughter is happy. Ajifa’s youngest sibling, her eight-year-old brother, Danish, adores her and is the first to come to her aid if she needs anything. “She loves being with him and can play with him for hours,” says Apila. Ajifa also plays with the other children in her community but only those who are a third her age.
“She understands everything that is going on around her but sometimes we fail to understand her when she tries to communicate using sign language. She does throw tantrums but only rarely and only if she is unable to communicate to us.
“Ajifa adores her sister Rini and whenever she feels sad – which is not often – she will point towards her and ask her to carry her around.’’
Apila dreams of finding a doctor who can help cure her daughter. “We have no idea what the future holds,’’ said Apila. “I will be her carer for as long as my heart beats, but after that… I can only pray for her. We hope some expert doctors from overseas will visit us and give us some answers to our questions. We would love someone to help our beautiful daughter.
“She is our darling and brings us so much happiness. She has an infectious smile on her face most days. We will do our best to give her a happy and fulfilling life.”