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Parents of 12-year-old with an incurable disease give a cry for help online

Wednesday, 9 April 2014 - 10:35am IST | Agency: dna

The Kolkata residents have started petitions on social networking sites urging govt action

Desperate times call for desperate measures. And parents of a 12-year-old are desperate for help to save their son.

The Chowdhurys, who keep shuttling between Mumbai and Kolkata, their home town, to meet doctors, have now taken to social networking sites to gather support for their son Arian who is suffering from an incurable disease called Mucopolysaccharidosis Type II (Hunter Syndrome). He was diagnosed with the disease when he was only four years old.

According to medical literature, around 2,000 people worldwide from a population of 7 billion suffer from this rare genetic disorder. The disease, which spreads slowly, drastically reduces life expectancy. Annually, Rs1 crore is needed to treat the ailment.

Child specialist and Institute of Child Health director Apurba Ghosh said, "His bones have become stiff and he is unable to bend his fingers or toes. There is facial deformity and his liver has enlarged. But his brain is still fine. The only way to arrest his condition is by injecting a critical enzyme that is deficient in his body."

"The treatment is called Enzyme Replacement Therapy, which is given in the form of intravenous injections. Also required is the drug Elaprase, which is available with only one company in the world — Shire HGT, an American firm. But the vials are too expensive for any individual to afford the treatment that costs around Rs2 lakh a week," said Sib Sankar Chowdhury, Arian's father.

Dr Mamta Murugun, consultant clinical genetic at PD Hinduja Hospital and one of Arian's several doctors, said, "A charitable programme has been initiated by Shire HGT. It is in the preliminary stage in India, but I hope a few deserving patients benefit from it."

Except in developed nations, most patients die young, with parents unable to afford the lifelong treatment of Rs1 crore a year. In severe cases, children survive till 11-12 years. In Arian's case, doctors have said he may live till 17-18.

"It feels so helpless to see Arian's condition deteriorate, more so knowing there is a treatment available. The cost is so enormous that we can't expect it to be met by individual benevolence. Only the government can urge the drug firm to be more generous. We are gathering support on social networking sites like Twitter (@Save_Arian) and have started a petition on change.org/arian," said Chowdhury.

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