Rare disease stifles their growth, not dreams

Rare disease stifles their growth, not dreams

Tale of grit

It’s a tale of grit of two siblings who want to prove their academic excellence, undettered by an illness that can only get worse with time.

Rekha K has scored 80 per cent marks in the II PUC examinations and aspires to study engineering. Her brother, Jayanth K, is a second year Electrical and Electronics student at the PES Engineering College here.

But the siblings have a rare disease that is found in one person out of 10 lakh –– MPS-4 or mucopolysaccharidosis, a group of metabolic disorders categorised by the body inability to break down super carbhohydrates in its cells that help build bones, cartilege, tendons, corneas, skin and connective tissue.

Until the age of three, both Rekha and Jayanth reached the regular milestones of child development as any normal child.

But after that, they started developing health complications. After being taken to various hospitals in Bangalore, doctors finally concluded that the siblings had MPS-4. “We can’t study for too long. We can’t even stand or sit for too long,” says Rekha, explaining the difficulties faced by her and her brother.

Their mother, Bhavani, explains that the siblings had to be dropped and picked up from school every day. They could not even carry their  bags.

The family spends Rs 10,000 every month for their treatment in Chennai.

“My husband works as a teacher in a private school and it is difficult for us to bear the expenses of their medical treatment. Doctors say a treatment is available for Rs 20 lakh to ensure that there are no further health complications, but we just do not have that kind of money,” she adds.

The siblings have been developing breathing problems in the past few months and Rekha is also losing her ability to hear. But neither of them has veered away from their dreams and goals.

KPCC member T S Satyanand said they planned to raise money through local associations to foot the admission fee of Rs 40,000 for Rekha’s engineering admission.

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