A teenager has broken her bones over a 1,000 times due to a rare condition that’s so extreme even noise is problematic.
Sabal Parveen, 18, from Bihar, northern India, suffers from Ontogenesis Imperfecta – a rare genetic disorder which leaves limbs brittle and remarkably susceptible to breakage.
The severity of the disease has meant that Sabal has broken 90pc of the bones in her body and requires 24 hour care.
She said: ‘I don’t want to call myself disabled because I have the will to be better, my brain is functioning just fine, but my problem is that I cannot move. My body let’s me down. I cannot eat, walk, move, sit, or sleep on my own.’My parents help me with everything. It’s a nightmare. No one can understand my frustration. Everything seems lifeless when you cannot do anything on your own.’
Sabal was born normal but when she was 20 days old, doctors noticed changes in her body.
Mother Ghazala Parveen, 37, a housewife, said: ‘She had extremely thin skin from birth but after a couple of weeks doctors told us she had very weak bones. She was given heavy doses of calcium as well as other medicines but her issues only increased with time. We watched as she slowly got worse year by year.’
Ghazala nurses her oldest daughter of six girls, 24 hours a day. From the moment she wakes up in the morning until the last thing at night. But Sabal is a strong and refuses to be a patient.
‘I hate that I’m having to rely on my mother,’ Sabal admitted, who is on a high dose of pain killers daily. ‘I want freedom like other girls my age, like my sisters. My body is like a prison.
‘Now a days I take happiness from little things in life. I rely on small things to keep me entertained.’
Sabal has a cat called Pushi that she loves, and she also loves watching Bollywood movies starring Salman Khan and singing along to music videos with her sisters and friends when they visit.
She is also determined to do well in school and she has recently started using an assistant to write her exam sheet only.
‘I only have hope,’ Sabal said, who wants to become a bank manager. ‘I have to hope that life will get better than this. My parents have taught me not to give up. They invest so much time and energy into me. I see them suffering so much because of me. I fight this battle because they fight with me. So I still work hard at school.’I study a lot, but I just can’t hold a pen any more as my fingers have broken so many times. I tell my assistant what to write and she writes only – thankfully the examiners have accepted this.’
Dr Manoj Kumar Choudhary, a consultant orthopedic surgeon, at Khageshwar Orthopaedic Hospital and Arthroscopy Centre, in Bihar, said: ‘Her condition is a very rare case and means imperfect formation of the bones. Bones in such a condition break easily and become hard to heal or fix. We cannot use plasters on such fractures so they are very hard to heal.’
Dr Manoj added that the condition is sometimes caused when a couple are close relatives – which is very common in India.Sabal’s parents are first cousins; their fathers are brothers.
‘Her body parts have starts shrinking, her height does not increase and she suffers constant pain in her body. I’m afraid there is no cure for this disease but we can continue treatment in order to give her a better quality of life.’
Sabal’s father, Shaheen Anwar, 47, a property dealer, carries his daughter whenever they need to leave the house.
OI is caused by one of several genes that aren’t working properly.Genes carry our hereditary (family) information. We each have two copies of most genes: one set from each parent. Genes are what make you look like your biological family.
Each of the genes that cause OI plays a role in how the body makes collagen.Collagen is a material in bones that helps make them strong. When these genes aren’t working properly, there isn’t enough collagen, or the collagen doesn’t work properly. This leads to weak bones that break easily.
Most children inherit the gene that doesn’t work properly from one parent. Some inherit it from both parents. In some cases, neither parent passes on this gene.Instead, the gene stops working properly soon after the child is conceived.
SOURCE: NCISHe said: ‘She is in pain all the time, we don’t know how she copes. Many people tell us to give up on her as she will eventually die. But how can I leave my daughter? I will be with her and fighting by her side until I have breathe in my body.’
Shaheen has spent his family’s savings – over Rs 500,000 (£6,000) – on Sabal’s medical bills. And Sabal is aware her father’s business has been suffering losses over the last five years.
She said: ‘My father saved a lot of money for the future of his daughters but he’s invested it all in my treatment. He has financial losses due to me. We used to go to expensive doctors but now we hardly see any doctors. We apply home remedies like a hot water pack every time my bones break so that we do not have to spend on hospital bills.’
Ghazala gets emotional when she thinks of her daughter’s future.
‘Who will look after her when we’ve gone?’ she asked. ‘Who will marry her in this condition? Her body is lifeless. I often hear her singing, she has the most beautiful voice, but what will she do with such a talent? Her life is wasted.
‘I wish there was treatment somewhere in the world and her destiny could be different. It kills me to see her like this; every day.’