Kids with genetic disorders seek govt help

NEW DELHI: Twenty two-year-old Dharmendra is one of the 9 lakh students who will be appearing for the Class XII exams, beginning this Thursday. However, unlike his peers who have been studying and revising the syllabus, Dharmendra has been running around hospitals and government offices to seek treatment for his younger brother who suffers from a rare genetic disorder, just like him.

"My 5-year-old brother was diagnosed with a rare genetic disorder MPS1 recently. He is young and doctors say that if enzyme replacement therapy is given to him now, he will not suffer from the same problems that I have," said Dharmendra. The teenager is 3-and-a-half feet tall, has a diminishing vision, bent legs and fingers. And he is not alone in the suffering.

According to medical experts, thousands of children are born in the country with such genetic diseases and suffer from the same fate due to lack of supportive treatment — which costs anywhere between Rs 3 lakh to Rs 1.5 crore annually.

"My both sons suffer from rare genetic disease called Gaucher's disease. They were born healthy but after two years, they started developing skeletal abnormalities and anemia. Doctors said that enzyme replacement therapy can help them but we cannot afford the treatment. We need the government to help us," said Sonu Pandit, a farmer from Khurja district in UP.

Similar demands were made by at least 100 other children who are suffering from rare genetic disorders and held a 'silent walk for awareness' at the Jantar Mantar on Wednesday.

Anmol (19) and Prabhmol (17) were born without any symptoms of a disorder, said their mother Kanwaljit. Both were considered happy, 'normal' kids till the age of five. ''But their physical growth stopped thereafter. Doctors found that Prabhmol's heart valve was leaking and his liver size had increased. It was a similar tragedy with Anmol. After running around hospitals in Delhi and other towns, it was finally diagnosed that both the boys were suffering from a rare genetic disorder called MP6 and the treatment, Enzyme Replacement Therapy, is very expensive,'' Kanwaljit added.

According to Prasanna Kumar Shirol, president of the Lysosomal Storage Disorder Support society, the government should consider a scheme to provide free treatment for patients with rare disorders. "LSD are a group of around 45 rare genetic disorders that occur due to deficiency of specific enzymes. Of this, 6 can be treated with supportive therapies, which are costly. Without government help, such children cannot survive," said Dr Ratna Puri, consultant, centre of medical genetics at Ganga Ram Hospital.

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