This might sound ridiculous but a rare disease called Progeria is wrecking havoc in a small family in India. Ali Hussai, 14yrs is suffering from this rare disease which has only 80 cases reported world wide. Two of his brothers and three of his sisters have died of thesame disease. He still has two healthy/ normal sisters alive. His parents Nabi, 50, and Razi, 46, are first cousins.
‘I very much want to live and I hope
there is medicine for my condition out there. I’m not scared of death
but my parents have suffered a lot,' he said.
'I’d love to live much longer for them. I don’t want to burden them with any more pain.’ Ali’s parents Nabi Hussain Khan, 50, and Razia, 46, are first cousins and were the product of an arranged marriage 32 years ago.
Ali and his parents are now supported by a Kolkata-based charity called SB Devi Charity.
Pediatrician
Dr Chandan Chattopadhyay, from Kolkata, introduced the family to the
organisation and now they help Ali pay for his medical needs.
Ali
spends all of his time with his mother and sisters, Sanjeeda, 20 and
Chanda, ten, and he believes there’s no one else like him in the world.
But when told about the famous annual Progeria Reunion, run by the Sunshine Foundation, he would love to attend.
‘It’s very lonely living this life, especially since my siblings have gone,' he added.
'I
don’t know if there’s anyone else like me. I’d like to be in the
company of other people like me again. And I know my brother would be
proud of me for doing so.’
----curled from Dailymail.co.uk
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