Old before their time
Cuddling my newborn baby, I stared at her long eyelashes, downy hair and chubby arms and legs. I held out my finger and her tiny hand closed around it instinctively, clasping tight. “I love you,” I whispered, leaning down to kiss her smooth skin. She looked perfect, but there was a knot of fear twisting inside me. Would she be like the others?
I struggled not to cry. I’d been so happy cradling my other children after they were born, only to have my heart broken later.
Was this baby, Chanda, going to be the same? I held her tight and squeezed my eyes shut, trying to suppress the fear.
Out of my eight children – Rehana, Iqramul, Gudiya, Rubina, Sanjeeda, Ali, Chanda and a son we never named because he died soon after birth – five had been diagnosed with progeria.
A rare condition with fewer than 100 cases reported worldwide, progeria sufferers age eight times faster than a normal person. Sadly, life expectancy is just around 14, the equivalent of being 112 years old.
I’ve had to watch, helpless, as my children died from the degenerative condition, and each time a little bit of me died too.
Luckily my two surviving girls, Sanjeeda and Chanda, don’t have Progeria, but my 14-year-old son Ali is being crippled by it. He is skinny, has a misshapen head and has lost almost all his hair. He is also very weak and tires easily.
He would love to be able to play cricket or go to the movies – all the things other teenagers do – but he has no friends and would be physically exhausted by a short walk.
Ali has been bullied most of his life because of the way he looks, so he prefers to stay home. He is a gentle, sweet boy who knows he is living
Every day I miss the children I lost. I dream about them, believing they’re back with me
on borrowed time but instead of worrying about himself, comforts his father and me.
“I’m not scared of death,” I once overheard him telling his sisters. “But Mum and Dad have suffered a lot – I’d love to live longer for them. I don’t want to burden them with any more loss and pain.” That made me cry, knowing how he cared more about our suffering than his own. Especially as he’s had to watch as his older siblings with the condition have passed away.
Every day I miss the children I lost. I dream about them, waking up in the night, believing they are back with me, laughing and holding out their arms for a cuddle. Then, in the dark, I realise they have died and I start to cry.
Often I am selfish and find myself wondering, ‘Why me?’ If I could go back I might have done everything differently.
In 1981 I married Nabi Hussain Khan, who was 18 at the time, a gatekeeper at a factory in Chhapra, in the eastern Indian state of Bihar. It was an arranged marriage – my father and Nabi’s mother are siblings. Our parents and uncles believed it was a good marriage.
Two years later we had our first daughter, Rehana. We were so excited. She was a happy baby, but she had a poor appetite. Feeding her would take ages and she was always thin.
After her second birthday, I realised she wasn’t developing fast enough. “She’s not walking properly,’’ I told my husband, worried. “And she won’t eat. She never finishes a meal.”
We took her to the village doctor who, after checking her, said she was small for her age. He did tests but sent us home saying, “Give her time to grow and she will be OK.’’
But when our son, Iqramul, was born four years later, and he showed the same symptoms at two years old, we went back to the doctor.
“There’s no problem with him. He too will get better,’’ the doctor said, offering no clear diagnosis while simply prescribing medicine. By now I was really worried about Rehana. She was small, with a head that looked too big for her body, and a narrow face. Her skin was scaly to touch but no one knew what was wrong. When Gudiya and Rubina were born – in 1989 and 1992 respectively – they had the same symptoms: large heads, bulging eyes and they couldn’t play for long as they became tired and found it difficult to breathe. More alarming, by the age of 10, they looked like 80-year-olds.
We’d never seen any other children like ours and couldn’t understand what was wrong with them. We’d never heard of progeria and the doctors never mentioned it to us. Believing it was our fate, we hoped they would get better, but instead they grew worse.
With hindsight, if a doctor had told us that genetics could be a possible cause for our children being born with these problems, we would not have had more children. But nobody even knew what was wrong, and so we carried on adding to our family, hoping we would eventually have a healthy child.
Thankfully, our fifth-born Sanjeeda was a healthy baby. We were overjoyed to see her take her first steps when she turned one and start to explore everything around her. That also made me realise how delayed our older children were.
They struggled to do simple things such as running around and playing like other children their age. They would become breathless and collapse if they did anything even slightly strenuous. Most of the time they just stayed in their room playing games amongst themselves.
Not having any answers as to why they were this way made it even harder. All the while we continued visiting doctors hoping someone would be able to help our children.
Finally, in 1995, a consultant in Kolkata, in the neighbouring state ofWest Bengal, diagnosed our children’s condition as progeria. Paediatrician Dr Chandan Chattopadhyay explained it to us and suddenly everything began to make sense. Now that he’d identified the problem, we thought he would offer us treatment. So I wasn’t prepared when he told us, “There is no cure”.
Devastated, I begged him to do something, but he just shook his head. “I am really sorry,’’