Rare Disease Has Left His Arms And Legs Paralysed, With | Milaap

Rare Disease Has Left His Arms And Legs Paralysed, With Brittle Bones That Could Break At The Slightest Touch


“I wish my son could also walk like others. The way he limps and struggles to take even a single step, makes me feel really sad. He plays by himself because the other kids don't let him tag along. He wishes to play with the rest of the children, but they isolate him. His siblings are the only friends he has. No other child wants to come near him, now. What will happen to him when I’m not around anymore? How will he grow up and become independent?” - Jema

His upper body is paralysed and his arms are deformed

Every parent’s wish is for their child to be born healthy, and grow up without any trouble or pain. But, this isn’t the case for Jema and Sonaram, whose 3-year-old was born with a rare genetic disorder that has left his upper body paralysed. Diagnosed with Osteogenesis Imperfecta Type-3, also called ‘brittle bone disease’, makes him increasingly susceptible to bone fractures due to decreased bone density. This disorder affects the connective tissues, as a result of an abnormality in the processing of Type-1 collagen.


My nephew has deformed arms and legs. They don't really work, so they are of no use. He cannot walk properly and drags himself to have any mobility. His hands are also super weak which makes it difficult for him to lift anything heavy. He has a swollen chest which makes it look like the stomach is bloated. The local doctors have given up and asked us to get the child treated by some big renowned one." - Mangal Singh, uncle 


"My child has been in this condition since birth. His arms and legs are paralysed and deformed. He can’t move them at all. His legs are so fragile that even when we try making him stand, he falls. He barely speaks - he only calls out to us saying ‘Maa’ and ‘Baba’. He understands everything we say, but doesn’t respond to us. I feel helpless looking at him. But, what can I do? I can’t abandon my child just because he is crippled. At the same time, I can’t even work to fend for us. I am at the mercy of others to keep ourselves warm and fed…” - Jema, mother

Despite approaching countless doctors, he wasn’t able to receive treatment

Over the last 3 years, Jema and Sonaram have taken their little boy to several hospitals, and consulted numerous doctors. Yet, they weren’t able to get him treated, as the doctors deemed it hopeless. They referred him to bigger hospitals, where the treatment would be inevitably costlier, which always left these parents nervous.

We would be left wondering where we would get the required funds, or what if even those doctors failed to cure him? Since there wasn’t much work available here, my husband moved to Gujarat. He sends us INR 2,000 each month… but how will I afford my son's treatment with just that much? Do I pay his medical bills or sustain ourselves? We barely have any money to get by, and so, on some unfortunate days, we have to starve…” - Jema

Without multidisciplinary treatment, he will never be able to enjoy a normal life

Jema’s husband, Sonaram, works as a daily wage labourer in Rajkot, Gujarat, earning a mere INR 5,000 a month, which is barely enough to fulfil the family’s daily needs. Jema has no opportunity to seek work, as her son’s condition requires her to stay beside him at all times and take care of him. The child cannot move himself so relieves himself anywhere, and hence needs a constant attendant around him. Jema depends on neighbours and others in her village in Jharakand, to provide her firewood and other basic necessities for the family.


“It’s painful to watch my sister-in-law suffer like this. She is a gem of a person, who takes care of everyone, but has no one to rely on in her hardships or help her when she’s in pain. Her only wish is for her child to get better, so he can walk on his own two feet and live like other children his age. She’s prayed for her child’s recovery and future all these years. It’s only a matter of whether someone will help us get the poor child treated. I appeal to you for the same.” - Mangal
The child needs protracted treatment including multi-stage orthopaedic surgeries, physiotherapy and rehabilitation, the cost of which will come up to INR 35 lakhs. His poor parents can’t even dream of affording the expenses of his life saving treatment. Only your support can ensure that he gets a fair shot at a normal life.

Click here to donate.

Identity of the child is protected in adherence to government guidelines.
SO
Patient Son of Jema Birua is 3 years old, living in Ranchi, Jharkhand
AC
Being treated in Aster CMI Hospital, Bengaluru, Karnataka

Receiving treatment for Osteogenesis

Click here to know more about Son of Jema Birua
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