Siblings in India with Rare Disease Share Wheelchair

April 30, 2017

BENGALURU: They may not be conjoined twins but Mandya siblings Jayanth, 24, and Rekha, 22, are bound by a wheelchair. Afflicted with a rare disease which affects their bones and spine prominently and renders them immobile, the brother-sister duo can move only with assistance of the wheelchair they share.
The siblings are among the nearly three lakh people worldwide diagnosed with Type 4 mucopolysaccharidoses. The software engineer-duo has taken up contractual jobs with the same IT company in Bengaluru for the sake of convenience. But they work in shifts, given their dependence on the wheelchair.
Rekha says due to their sub-optimal physical condition, they are constantly in need of assistance.Their father, Krishnappa, 60, is set to retire soon as a schoolteacher. “We have to ask for help even to go to the restroom or eat. Our body strength is very low; even holding a laptop is difficult. We share an old manually operated wheelchair. A customized one will help us with mobility , making us somewhat self-dependent,” says Jayanth.

The siblings cannot sit in rigid office chairs; they feel the flexible back of the customized wheelchair will provide more comfort. However, two such wheelchairs cost Rs 3,75,000, which they cannot afford.

For Krishnappa and his wife, Bhavani, 56, relocating for their children’s sake is nothing new. The family moved to Mandya from their village so that Rekha and Jayanth could get a good eduction. After the children graduated as engineers, the parents took up a house on rent in Bengaluru near their place of work. However, their advancing age is accompanied by a simultaneous deterioration of their children’s health. 
“We were both born normal except for a hump on my brother’s chest, which appeared like a swelling when he was two-and-a-half years old. Apart from that, there were no major symptoms. He was wrongly treated for rickets, that resulted in many side-effects. Finally, our blood and urine samples had to be sent to Taiwan for a correct diagnosis. Coming in 2011-12, it was 18-20 years too late,” rued Rekha.

Multiple visits from Mandya to various hospitals in Bengaluru went in vain. Most of the time, doctors claimed to have no idea of what they were dealing with, she said. “Technology has advanced to a point where such abnormalities can be detected in the womb itself. Dr Chandrashekhar from the UK had told my parents there were chances of their other children also suffering from the disease. Unfortunately, my mother was already pregnant with me at the time,” said Rekha.


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