‘Please don’t call my baby a were­wolf’

Born cov­ered from head to toe in thick, black hair, Savita Karande was hop­ing her baby wouldn’t in­herit her rare ge­netic con­di­tion. Hold­ing her new­born, she knew she had to be dou­bly strong

Friday - - FRONT PAGE -

S ink­ing back on the bed ex­hausted, I smiled. My just-born daugh­ter’s cries filled the room. “How is she?” I mur­mured, watch­ing my mother cradling my new­born in her Anita Samb­haji Raut, who was hold­ing my baby, and waited for her to tell me ev­ery­thing was fine. Si­lence.

I tried to catch her eye, but she seemed to be avoid­ing look­ing at me. “Mother, how is she?” I re­peated, nerves jan­gling through me. “Please. Please tell me that my lit­tle girl is OK.”

She raised her eyes to look at me. I no­ticed they were full of tears. Tak­ing my hand, she said very softly: “She’s like you.’’

Dev­as­tated, I burst into tears. “Give her to me,” I said faintly. “I want my daugh­ter.” I held out my arms and gazed at the tiny new­born wrapped in a white sheet. She was al­ready asleep, and looked per­fect. Gen­tly, I moved the sheet away from her tiny body and saw that she was cov­ered from head to toe in soft black hair. “Not you too,” I thought, stroking the back of her hand. I could imag­ine what she would have to go through, how hard her life was go­ing to be. “I’m here for you,” I promised, bend­ing down to kiss her. But would it be enough?

Just like my daugh­ter, I’d been born cov­ered in black hair. So had two of

I could imag­ine what my baby would have to go through, how hard her life was go­ing to be

arms. When she didn’t an­swer, a wave of fear crashed over me. What if my baby had in­her­ited our fam­ily’s dev­as­tat­ing con­di­tion?

My two younger sis­ters – Mon­isha, now 19 and Sav­itri, 17 – and I have a rare dis­or­der called Were­wolf Syn­drome – also known as Hy­per­tri­chosis Uni­ver­salis. We have long dark hair all over our bod­ies – a con­di­tion that left us liv­ing as recluses, and wear­ing headto-toe tu­nics if we ever had to go out, to stop strangers point­ing or mak­ing fun of us. Now I stared at my mother, my sis­ters. My fa­ther Samb­haji Lax­man Raut, who died in 2007, had also had the ge­netic con­di­tion and had passed it on to us. There was no known cure, and the only so­lu­tion was us­ing hair re­moval cream ev­ery day. But it wasn’t just the hair that was the prob­lem. Our fea­tures were dif­fer­ent too – our noses are broad and our faces wide. But Mother al­ways told us how much she loved us – and I would do the same for my lit­tle girl.

It wouldn’t be easy though. As I grew up, the hair cov­er­ing me grew longer and coarser. My sis­ters and I were shunned by our com­mu­nity in Pune, in the western In­dian state of Ma­ha­rash­tra.

We used to stay in­doors, never go­ing to school or step­ping out­side to play, fear­ing the name-call­ing and laugh­ing. When­ever we went out­side – for a check-up to the doc­tor or to visit our rel­a­tives – people used to scream and

shout ‘here come the beasts’. “Please mother,’’ I used to beg. “Please don’t send us to school. We can’t bear the taunts.’’ It was eas­ier to re­main in the safe sur­round­ings of our fam­ily and home.

Luck­ily we had three other sis­ters – Swati, 23, Di­pali, 21, and Lakshmi, 14 – who are nor­mal. They were al­ways a huge sup­port to us, but they can never fully un­der­stand our pain. Mother used to try to pro­tect us when we had to step out by cov­er­ing us in long tu­nics with barely our eyes vis­i­ble. Or she would opt for short­cuts through lanes that were de­serted, but as soon as any­one spotted us, they would alert the

When­ever we went out­side, people used to point, scream and shout, ‘Here come the beasts’

en­tire com­mu­nity who would come out to stare or ridicule us.

The doc­tors told us there are only a few hun­dred cases in the world of people with Were­wolf Syn­drome and pre­scribed hair re­moval cream. It was a te­dious rou­tine – we had to ap­ply the cream al­most ev­ery day, but it worked well. Nev­er­the­less, my sis­ters and I were too em­bar­rassed and ter­ri­fied to ever leave the house.

A s the years passed I feared I would never be able to get mar­ried and have a fam­ily of my own. “We will find you a good hus­band,’’ my mother of­ten said, but I didn’t re­ally be­lieve her. Af­ter all, I used to think, who would marry me?

But Mother, who was work­ing as a helper in a lo­cal health-care cen­tre, promised to find me a good hus­band af­ter my fa­ther died of a heart con­di­tion. And even­tu­ally she did – Milind Manohar Karande.

His fam­ily were friends of some vil­lagers who knew about my con­di­tion. His par­ents ac­cepted it, but I didn’t know if he knew. And as it was an ar­ranged mar­riage I couldn’t meet Milind, 29, be­fore­hand to tell him about my con­di­tion.

We mar­ried in May 2012. I couldn’t con­tain my hap­pi­ness on my wed­ding day – it was all I had ever dreamed of. Af­ter all, I was start­ing a new life.

Milind and I didn’t know each other, but we both trusted our par­ents’ judg­ment and we had faith in their de­ci­sions. I soon found out that Milind was par­tially sighted, but when he touched my arm he asked why I had such hairy skin.

“It feels dif­fer­ent to other people’s,” he said. When I ex­plained my ge­netic con­di­tion he was very un­der­stand­ing. I was over­joyed to have mar­ried a man who was so ac­cept­ing.

I moved in with Milind and his par­ents in the next town and life soon got into a rou­tine of do­ing reg­u­lar house­hold chores and tak­ing care of my hus­band and in-laws. I was so happy.

But my mother con­stantly wor­ried about me. She was al­ways tex­ting and call­ing me. “Are you OK? What are your neigh­bours like? Has any­one been nasty to you?’’ she would ask. She was ter­ri­fied my new com­mu­nity would

not ac­cept me and would start ver­bally abus­ing me.

I was also a lit­tle wor­ried that life was go­ing to start em­u­lat­ing my child­hood. But thank­fully ev­ery­one was fine. There were some ob­vi­ous looks and fin­ger point­ing when I stepped out but this was noth­ing com­pared to the abuse I had faced as a child.

And, best of all, within just a few months I was preg­nant.

“I’m ex­pect­ing a baby,’’ I told my mother over the phone. “My dreams are fi­nally com­ing true.’’

But we all knew the truth – there was a big chance that this baby would be born with the same con­di­tion.

I prayed daily that she wouldn’t

My daugh­ter Swetha will need to fight people’s prej­u­dices, but she has a sunny, kind per­son­al­ity

in­herit it but there was noth­ing I could do. I wanted this baby at any cost, and would love her no mat­ter what. There were no tests I could have so I just had to wait – un­til now.

“Oh lit­tle one,’’ I sobbed. “I’m so sorry.” But she was still asleep, un­aware of all the emo­tion swirling around her. “I love you,” I whis­pered, hug­ging her.

And al­though I was ini­tially sad, Shweta was so sweet and easy-go­ing that I loved look­ing af­ter her and be­ing a mother. Tests done when she was three months old con­firmed she had the con­di­tion, but my doc­tor was hope­ful there would be a cure even­tu­ally. “There isn’t any­thing now but tri­als for new medicines are go­ing on. Soon, hope­fully a drug will be found,” he as­sured me.

Shweta is eight months old now, healthy and happy. My hus­band and my in-laws are ex­tremely un­der­stand­ing and do not blame me for my child’s con­di­tion. They knew that there was a chance that she would have it. They love play­ing with her and car­ry­ing her around. My hus­band says that he will save up enough money to give her the best treat­ment for the con­di­tion. I am blessed to have such a fam­ily.

I have ac­cepted her con­di­tion – na­ture has made her and I this way, so I be­came de­ter­mined to make her a strong girl. She will need to fight people’s prej­u­dices, but she has a sunny, kind per­son­al­ity.

I love be­ing a mother; I can­not wait to have more chil­dren. If they have the same con­di­tion we will cope, though I am pray­ing for a mir­a­cle that they will be free of the con­di­tion.

See­ing the amount of love be­ing show­ered on my child truly fills my heart. My only dream now is that medicine will be dis­cov­ered to cure her con­di­tion so she will not have to suf­fer the pain I did while grow­ing up.

I promised my baby that I’d care for her as best as I could

REAL LIFE The doc­tors are hope­ful that a cure will be found soon

I love be­ing a mother and want to have more chil­dren

My hus­band Milind has been a huge sup­port

My mother Anita en­joys be­ing with my baby

I have ac­cepted her con­di­tion – na­ture has made us this way

Two of my sis­ters also have the con­di­tion

Newspapers in English

Newspapers from UAE

© PressReader. All rights reserved.