By Taniya Dutta
A pair of Indian sisters have not led a rare condition that breaks their bones even with the slightest touch, affect their zeal for life.
Rakshi and Sonam Hussain, 25 and 21 respectively, have not stepped out of their house in four years.
The only time the young women have gone out since their birth is for visits to doctors.
The sisters from Firozbad- a town just three hours away from Taj Mahal in Uttar Pradesh, suffer from Osteogenesis Imperfecta, commonly known as Brittle Bone Syndrome.
Rakshi and Sonam have tiny, thin twisted limbs like ‘swords’ which have not developed fully and are so delicate that even a slightest touch can cause fractures.
They have lived all their lives restricted to a small bed watching TV and reading their brother’s school text books.
Even to use toilet, the young women have to be carried by their parents.
Sonam says: “Our limbs are extremely delicate. We cannot touch anything heavy. Even a light yet sudden touch can cause our bones crack.
“We stay a very cautious life. We do not allow anyone to come near us in fear of them touching us forcefully and breaking our bones.
“We have spent all our life on this bed. We eat here, we read books and surf internet-everything lying in the bed.
“The only time we went out of our house four years ago for my elder sister’s wedding and doctor’s visits.
“Since our limbs are not fully formed and are very weak, we cannot move on ourselves. We have to be carried by someone. Even to use toilet, it is either our mother or father, who carries us.”
But even the painful condition has not deterred their zeal to live life happily.
The sisters are well aware of their incurable disease and have no qualms about it. Rather, they wish to focus on studies so to make their living a worth.
The two want to get a personal tutor who can help them study and learn English-the language most favoured by Indians for jobs.
Sonam says: “We know we cannot be cured but we do not want to waste our life crying why we are born with this disease. We wish to study and learn things in life. Since we cannot go to school, we hope that a personal tutor can come every day and teach us all the subjects, particularly English.”
However, their dream is too expensive for their father Shahzaad Hussain, 55, who works at a bangle making factory and earns a meagre sum of £55 a month.
The father of five-three daughters and two sons says he exhausts all his earnings feeding the family and in consultations with various doctors for the girls treatment every month.
A personal tutor who takes anywhere between £10-30 is beyond his capacity.
Mr Hussain laments: “My girls are very bright and sharp. They are very intelligent and quick learners. Even though they are bedridden, they can do eat on their own. They try to read their brothers’ books and surf internet on own.
“They wish to study like normal kids. When they were young they would ask me to take them to school but who would have taken care of them? They are so weak that we try not to touch them.
“They are like glass dolls and we have to be extra careful.
“I do not earn enough to feed the family of five. Hiring a tutor is very expensive. I want to give them education like my other children but I am helpless.”
Shahzaad and his wife Khushnaaz Hussain, 47, had not undergone ultrasound in both the pregnancies as their eldest child- a daughter was born healthy.
Shahzaad said: “I had given proper medication to my wife throughout the pregnancies but doctors did not tell us about ultrasound. We did not know about its importance as since our elder daughter was born a healthy child we were not much worried.”
The father admits he was shocked to see his second daughter Rakshi born with ‘sword-like’ limbs and consulted at least 70 doctors for possible treatment. However, they all turned them away saying there is no cure for the disease.
The father said: “She was very weak and tiny and her limbs were twisted like two swords.
“I had not seen a child like that before. We took her to bone specialists immediately after birth but they asked us to come once she turns six month old.
“When we took her again, the doctors could not diagnose the cause and said she will be fine.”
Four years later, Khushnaaz gave birth to Sonam who too was born with the similar symptoms.
But unlike Rakshi, Sonam is little better and can sit for brief time.
She is also the one who is outspoken and zealous. She encourages her elder sister to not lose hope and be determined to live their life to the fullest.
The adorable woman said: “I do not feel bad that we have this condition.
“Yes, when we were young we would often cry and ask our parents why we are like this but my father did not leave any opportunity to seek doctor’s help.
“Sadly, every time we were told that there is no cure available for our disease.
“My sister would cry at times but I tell her that we are special. We have accepted ourselves with time. I do not feel pity on myself.
“My sister and I are God’s will and we will respect him. But we do not want to waste our lives.
“We want to study and see the world. We hope that we can get education at home and make our lives worth.”
But for Shahzaad, seeing his daughters suffering is devastating.
He says the girls hide their suffering behind their smiles but he feels helpless to not able to give them any comfort.”
“They cannot bear extreme cold or extreme hot as that aggravates their pain. They get pneumonia very soon and we have to keep a watch on their health.
“They ask me if we can have an air conditioner and radiator but I feel guilty of not being able to give these little comforts to my suffering children.”
Their helpless father hopes to get help from good samaritans who can support him fulfil his daughters wish to get home tutor.
He says: “I know my daughters cannot be completely treated but I can hope to give them a comfortable life and fulfil their dream of getting education. I hope we can get regular help to support the tutor’s fees.”
To help the girls achieve their dream of studying, please visit the donation page: https://risefundraiser.com/campaign/help-sisters-suffering-from-brittle-bone-disease