Old be­fore their time

Friday - - Society -

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,’’

Newspapers in English

Newspapers from UAE

© PressReader. All rights reserved.